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[Elliebee]

Hi Wrensong at the moment I am ok with the decision as my symptoms are mild. I feel better since my B12 injection and taking iron and vit b supplements. Of course if I start to feel worse I will request a further blood test.
My antibodies were 227 (0-33 is normal). So not sure if that is a really high level? Also I think just because I have the antibodies it doesn’t mean I will develop full blown hypothyroidism?

[Spiderley13]

Hi Spiderly13, I'm sorry you've had no answers to your post.  I haven't been in your position of raised T4 with normal TSH, as I'm long term hypothyroid, but as our thyroid replacement dose requirement tends to lessen with age, I do know what it feels like to be on too much, leading to a raised T4 & symptoms of effectively being temporarily hyperthyroid.  Do you have symptoms that you're thinking could indicate an overactive thyroid that are making it difficult to know whether everything you're experiencing is "just" down to perimenopause?  If you'd like to post your TFT results with ref ranges & any symptoms you're concerned about, that will help us to get an idea of what might be going on.  I'm not on the forum much at the mo as have had a bit going on past couple of months, but we have quite a few members with experience of thyroid disease, so hopefully one of us will be able to help if you don't mind giving a bit more info.  You could also PM me if you get no response, but not all PMs are coming through to email for some reason, so I'm finding I'm unaware until I log on that messages are waiting.
Wx

Thank you so much for your reply ….. the symptoms I experience are  :-

Anxiety
Fast heart rate
Raynaulds
Weight Loss
Hot flashes

Test Results :

TSH  (0.27- 4.2)      T4 (12-22)
1.54                        24.5
1.23                        23.9
1.16                        21.6
0.8                          27.8
2.13                        28.7
1.8                          27.9
2.35                        30.5

 Went to gp after first test and they did bloods but T4 was in range on there tests so referred to specialist , they did do some tests but as it was years ago can’t remember what all of them were to be honest ! I’m just unsure whether to look into it again further or just conclude I’m one of those people who is consistently out of range for no reason !!

Thanks again for any advice anyone can offer

[Wrensong]

Elliebee, that's really good that you feel better for the B12, iron & B group.  I think your intention to leave things as they are for now is sensible, flagging up any changes that concern you.  Do make sure not to take B vits containing biotin in the few days before any future TFT though, as this can skew the results, as I think has been mentioned already on this thread.

Yes, it is possible to have thyroid antibodies without progressing to thyroid dysfunction of a degree that requires treatment. 

I think at the point my thyroid condition was diagnosed my antibodies were in the high hundreds, but can't be sure as it was nearly 30 years ago.  I wasn't given the results though I recall the requesting Consultant who went on to do my thyroidectomy remarking on how high they were.

[Wrensong]

Hi Spiderly13, thanks so much for posting with more info.  What a difficult situation for you    Your TSH has always been unequivocally within range as you say, yet all but one FT4 are above range & the in range one was also near the top.  It's true that some people's results in good health fall naturally outside the ref range, but with those symptoms at perimenopause it's so difficult to be sure what's going on. 

Though I also had marked weight loss, taking my weight way too low in peri, this, together with your consistently raised FT4 does make me wonder what's going on.  The anxiety, hot flushes & raised heart rate can be due to peri or thyroid dysfunction as I'm sure you know.  If your heart rate is consistently raised though, rather than just in short episodes, that would also make me more inclined to think about thyroid as possible cause.  I also have Raynaud's btw & had all the other symptoms you mentioned  & more throughout peri so I know these don't come without worry at this stage of life when there's a nagging question over possible dodgy thyroid involvement.

Can I ask is your weight too low, or have you just lost a bit?  Also do you have any other medical conditions & are you on any supplements or medications, inc HRT?

The normal TSH with raised T4 is unusual & I'm afraid I can't find much research that gives helpful insight.  The links are to articles from a Clinical Endocrinology journal & GP Notebook, but the former is complex & I've struggled to make headway with it.  The relevant section in the GP Notebook article is headed "normal or raised TSH, raised free thyroid hormones".
I have not copied out extracts, as you may prefer not to read the detail if you are happy with your doctor's guidance.

Clinical Endocrinology
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2265.2011.04023.x

GP notebook
https://gpnotebook.com/simplepage.cfm?ID=-1080426419&linkID=63475

Can I ask do you know whether you have thyroid antibodies & has anyone tested your FT3?

In your position, if it's some years since you saw an Endocrinologist, I think I'd want further expert advice at this stage, but if your GP doesn't think it necessary & you are happy as you are for now you could watch & wait.

Sorry, this doesn't feel like any help at all but I do feel for you.
Wx

[Wrensong]

Bumped for klf68.

[Wrensong]

Bumped for Moog77.

[Moog77]

Excellent! Thank you wrensong!

[Wrensong]

No problem.  It means we have a place to post thyroid queries without taking other threads off topic & hopefully more members with a thyroid history will see the posts here.
Wx

[Moog77]

It does appear that there is an interaction between HRT and Thyroid meds.Really keen to get my blood tests on Friday.

I suspect I need a bump in Levo as opposed to have been given a dose of T3 from my results at the beginning of the year.

TSH 2.72 (0.27 - 4.2)
FT4 15.9 (12 - 22)
FT3 3.4 (3.1 - 6.

My Ft3 has never been above 4.5 and that was on 135 levo a couple of years ago. That dose suppressed my TSH to 0.07 and put my FT4 up to 22.1. However I was definitely starting peri (unbeknownst to me).

I feel like the 10 mcg of T3 has done nothing for me at all.

What a palaver this is! Such a pain trying to establish what is what. I am pretty sure my current slump is Thyroid though - numbers certainly indicate it.

[SundayGirl]

I suspect you're not feeling brilliant with thyroid numbers like these.

TSH 2.72 mIU/L (.27 - 4.2) 62.3%
Free T4 (fT4) 15.9 pmol/L (12 - 22) 39.0%
Free T3 (fT3) 3.4 pmol/L (3.1 - 6.8 ) 8.1%

Just wondering why you've been given T3 as opposed to a much needed increase in Levo. (Although it looks like you're a poor converter.)

May be worth posting on the thyroid board on healthunlocked. There's some very knowledgeable people on there who will help.

EDITED TO ADD:
How are your vitamin levels? Vitamin D, B12, folate and ferritin need to be optimal  (not just above the bottom of the range where a GP would tell you that you're fine)

[Wrensong]

Moog77, if you felt better on more Thyroxine & not for adding T3 then I'd hope your GP would be happy for you to increase your T4 dose.  As your T3 was quite low I'm a bit surprised though that you didn't feel any benefit from taking Liothyronine.  Could you not feel a boost to your metabolism 3-4 hrs after taking it?  I certainly can from just a 5mcg dose so I'd expect you to feel a difference, especially if you were taking 10mcg in one go, but my T3 is routinely considerably below range & I'm quite a small woman so perhaps the effect is more obvious for me.  I expect you know T3 has a very short half life though, meaning the effects wear off quite quickly, unlike Thyroxine.  For that reason, many patients who take T3 take 2 or 3 doses a day.

I hope your upcoming tests help you make progress.
Wx

[Moog77]

Thank both for taking time to reply - it is very very much appreciated indeed 

I am reluctant go to my GP for thyroxine - they only test TSH and were happy with me 'in range' which was essentially a TSH of round about 2.5 on levo of 50. FT4 and FT3 were not tested. So i went to a private Endo and he wrote a letter to suggest medicating me where FT4 and FT3 were in the top third - I gradually build up to 135 under his guidance but GP were not happy with bloods showing low TSH of 0.07 and high -just! - FT4 22.1 (despite FT3 only reaching 4.5). So a compromise was reached of taking 100 where my TSH hovered around 1. The cost of the endo was adding up so I settled at this and felt OK. In hindsight this was around when peri started to really kick in as well (2022).

My recent blood tests were private as I just knew something was off and I was certain it was my thyroid - and numbers suggest so!

So I went private to a recommended forward thinking GP with my results hoping for a bump in Thyroxine instead of fighting it out with my own - getting an appt is also a joke in itself. I just couldnt face it - more on that rationale later. Private GP said yup you are undermedicated hmmm you're T3 is really at the bottom lets try you on that and I almost turned cartwheels as I have heard so much about how hard it it to obtain this. So I thought I was being offered a magic bullet to be honest - even though in the back of my mind I thought more levo was needed. And thats where I am at now. Getting private tests Friday - testing all Vits and Hormones as well as Thyroid. The private GP did say that I might need more Levo and more T3 its just a case of changing one thing at a time. I will be interested to see what bloods say. I have heard of T3 'switching off' or lowering T4.

Am aware of the importance of B12 Folate Vit D and Ferritin and how they can impact you in general and also thyroid function. I am lucky enough to have coeliac disease and these were rock bottom for a very very long time before I was diagnosed with the condition so periodically test them albeit has been a while. It was Health unlocked that persuaded me to try to up levo from 50 originally - very helpful forum!

This brings me to my reluctance with GPs and the NHS and I apologise if this is wordy. I was a hair away from being prescribed Lithium for my ongoing 'depressive disorder' that I had been diagnosed with for close to 20 years. The main symptom being me feeling awful with intermittent 'stomach upsets' and convinced there was a physical reason. Blood test kept showing I was anaemic. So id take iron and get my levels up then they would plummet. I eventually obtained further private blood tests showing appalling levels of Folate, Ferritin, Vit D and Calcium. When presenting these to my GP I was told I needed to take supplements and 'eat better'. Supplementing again brought them up but they would again plummet.

In the interim I was feeling awful. I eventually asked GP to test for Coeliac disease which they poo pooed and said no you're fine. It got to the point all I could eat was yoghurt and I was starting to wonder if somehow I was doing this to myself and it was all in my head. So I ordered my own Coeliac test.

Antibodies level were indicative of Coeliac over 10.

Mines came back at 1,240.

Luckily I had private insurance via work at the time and the gastro I saw said he had no idea how i was walking around with those numbers and my my vitamin levels. He ordered a endoscopy and of course it confirmed that I had a very well established case of Coeliac disease. A gluten free diet has been wonderful and it took about a year to heal. I immediately moved GP surgery as I was so disgusted with my treatment and the blinkered approach that I was mentally unwell. During this period I also had 2 very early babies which is likely to be a result of undiagnosed coeliac disease. My body had nothing to support a full pregnancy. I am most angry about this although both my children are strapping teenagers now despite very bleak prognosis due to prematurity. I am also on an anti depressant that is notoriously difficult to come off - not even a therapeutic dose! - due to the insistence to blame mental health and GP keen to throw them at me.

I was diagnosed with Coeliac in 2017. I was diagnosed with Hypothyroidism in March 2020 when I suspect peri was creeping in which then really ramped up in 2022. So Ive not really had a good spell of feeling fully well. Its frustrating. But I know the balance needs to be found. Feeling unwell can be incredibly triggering for me as I always question if its physical or mental.

I havent noticed any difference with T3 at all to be honest - I am not small        - I am 5'7 and relatively strong due to lifting weights. My FT3 has never ever been particularly high since being medicated so it does look like there is a conversion issue and I did hope for some kind of improvement. Perhaps I need more.  Thyroid antibody levels have always been normal and I have always suspected I may have central hypothyroidism as my TSH wasn't particularly high when finally diagnosed - 4.84 - and FT4 was at 11.

Sorry this has turned into my life story!

[Wrensong]

Hi Moog77, sorry for the late response & thank you for taking the time to provide some detail.  I'm so sorry you've had such such an awful time of it.    I will try to come back to you later.
Wx

[Moog77]

Wrensong

Please don't feel the need to respond I was just having a massive rant to offload!

As we all do when we are feeling below par in the quest for balancing everything out!

[Optimist2021]

Tbh I've come to have a whinge.

Thank you for this thread.

I was misdiagnosed and was untreated for hypothyroid for years, with lasting consequences.

Then it was adequately treated with privately procured T4 and T3.

Then before covid the meds seemed to become ineffective. I didn't think of perimenopause because I didn't have new symptoms.

Higher and Higher doses of what was available to me thyroid wise , did not budge the levels so I assumed the meds were a dud.

When I had a few hot flushes, sleep problems, even less regular periods, and painful to touch boobs, I was prescribed estrogen gel and progesterone capsules. I have no problem with the format, I do not want patches or combos. I want to be able to independently control both

At the same time, the doctor had tested FSH, LH, tsh, fT4.
FSH through the roof.
Tsh low in range.
T4 below range
Ft3 was not requested by doctor at that time.
Repeated tests including ultrasound in past have had zero indication of autoimmunity.

Doctor said to retest thyroid, including ft3 and antibodies in three months.

The below range T4 is while taking meds.
As it is an all time low, I decided it's a good time to crease meds for six weeks and see what happens. Can't get any worse.

I first tried the progesterone at 100mg an evening. To see if it helped with sleep. It did. A few days later I added a half pump of estrogen in the morning.

I've been doing this just about consistently for seven weeks (with no thyroid hormone)

No I have not been taking full doses of either and I have not had a break from progesterone. Why ?  I've always been low in progesterone and want it to top me up.

After three weeks I had a period. After three more weeks I had a period.

In the seven weeks I have gained 4kg quite fast. I feel demotivated and blue some days. Nothing unfamiliar, but I can usually get myself going. But not at the moment. The 4kg is proper..as in increase in body size all over, not just a bit of fluid retention.

Sleep has been sketchy again but I put that down to usual PMS and period

Gut is very bloated. I would usually make a nutritional modification to help bloating but I don't have any self discipline or motivation to do so.

All of the symptoms are hypothroid like. I have not been entirely without meds for eight years, so perhaps this is the outcome. 

I have asked for blood tests to be brought forward and they are happening next week.

In the meantime, I'm just over it. With the thyroid i never knew WHY my body doesn't make thyroid hormone or convert T4 to T3.  It's no use writing all your helpful suggestions to me about nutrient deficiencies or stress or test this and test that, because I have done all of it.

Re hrt. Because I've never made much estrogen or progesterone, but still suspect estrogen dominance (hence frequent bleeds), I'm going to try a few weeks with just progesterone to help sleep.  I don't know of any good reason not to use progesterone on its own. And unless you have some cold hard facts (scientific papers) to refer me to, I appreciate no scare tactics regarding the experiment which is my choice.

I had hoped the thyroid problem would disappear. And until I have the blood tests I will not make any assumptions.  Perhaps I'm not hypothyroid. Perhaps I'm just grumpy!

Yes, got my eye on B12 and d and iron.

Moan over. Except. Burstits. Had for many years and it's constant pain. I never complain about it and am sick of hearing people go on about their pain. Like, we all got pain!!!

Sorry for the blah vibes. Nowhere else ti go with this. I am my support network 😆