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[Fizwhizz]

Thanks fizz, very interesting!
The one thing I found when ordering etc with Thyroid clinic was that it wasn’t very clear, you are doing the right thing by ringing them.

I’m glad it wasn’t just me that was confused. Meg has just replied by e mail and all new patients are required to have a standard set of tests carried out by the clinic, if I’ve understand her correctly. I’m just going to go with that for now as I think this is going to be an ongoing process. Thanks for the article. I read it once but need to re-read it to fully digest it. I knew your own thyroid stops working in if you start supplementing so it makes sense.

[joziel]

Kathleen, thanks yes, I thought about splitting the estrogen dose... but I think my problems are thyroid related. I don't have any of the problems of low estrogen that I originally had before starting HRT, and going from 5 to 6 pumps mean I don't even leak wee now (I used to leak a few drops in the latter part of the month, that was my one remaining symptom - and vaginal estrogen wasn't really doing much for that). So, as long as my estrogen isn't sky high now, I'm going to be very happy staying at this dose. (Although might try a switch in future because it does take a while every morning to rub 6 pumps in...!)

Less than a week to go now till my next bloods... I had a bad night last night: I couldn't get into deep sleep, but would just startle awake. Then I spent the whole night in quite a light sleep, dozing. Waking many times. Heart beating hard and faster than usual. This morning my head feels thick and I'm a bit dizzy from it. This has been going on almost 2 years.

Whilst I'm so glad I've finally found out that it's my thyroid, I'm getting increasingly impatient with being prescribed enough thyroid meds to actually fix things. Initially I was only given 15mcg of T3, which is no where near enough - and left on it for about 10 weeks. My T4 crashed and we only found that when I next did bloods. Then I was given 50mcg of T4 (not a lot) and Xmas got in the way, delaying my next bloods - and the rT3 result takes forever to come back. And so here I am again.... waiting - and it's just a bit infuriating when I know that I need an increase, I can tell easily from symptoms and signs.

I find myself browsing very dodgy internet sites for buying T3 abroad. I've managed to put myself off attempting that yet (is it what it purports to be? does it have crappy fillers?) but I'm getting desperate and if I'm not given enough yet again, I'll definitely be going there... I can't go on like this.

[Fizwhizz]

I hope you get things sorted out soon Joziel. It’s so frustrating. I’m so tired of feeling tired all the time. I sleep like a log and still wake up feeling tired!  I thought it was normal but clearly it isn’t.

I found this interesting.


https://www.womenshealthnetwork.com/thyroid-health/why-you-might-not-need-thyroid-medication/?trk_msg=HAI4UA5E6H6KBFVVNSLRG6K1SC&trk_contact=6G2PCCANKE8F5LMDSQU2SAGNCO&trk_sid=5DIO82JK3NIHTL19GTMBQJPRJS&trk_link=M4UHSE6PI8V43BQ6CGTM4S3LTS&rvg=&utm_source=listrak&utm_medium=email&utm_term=Read+More+Now&utm_campaign=The+problem+with+your+thyroid+might+not+be+what+you+think&utm_content=CPHT

[joziel]

Yeah, I'm bored of reading stuff about conversion problems - because I've been through everyone's entire list of conversion problems, and I'm doing everything on all of them, and none of it helps. From eating an optimal diet (when I can actually eat something), to taking the right supplements and getting optimal nutrients plus an iron infusion a year ago.

So all those people who think we don't need thyroid meds and can fix things otherwise can just do one, as far as I'm concerned - because I'm shaking through the night just because they think I should eat fewer carbs or something. It's just not useful.

I also now doubt a conversion problem is my issue, because my labs on 15mcg of T3 plunged my T4 below range, which really shouldn't happen. Like Dr Conway said, it's more that your body tries to get by for as long as possible and thyroid problems are actually not straightforwards to diagnose on labs. It's not just about raised TSH...

[AmandaJR]

Keep going Joziel. Your body has had a lot of changes over the last year, maybe it needs time to adjust/catch up? Your symptoms are improving gradually - you might not be far off cracking this!

[Floral]

Joziel, reading your post is just how I feel!!  I too do not want to read or hear of reasons for high reverse T3 and becoming low on T3! - iv tried so hard this past 2 years to FIX things because of these crashes and many other symptoms AND have spent huge amounts of money, it was only by putting my thyroid results on this thread and you ladies replying that I began looking into THYROID more and then Paul Robinsons input as well.  I am now at a stage where I can do very little.  The heart thing is distressing and mine can race and pound plus  the heavy head I have every morning too usually developing into a headache - I alsohave sweats every day from about 6.30am but if I increase my 75 patch I feel worse🤷‍♀️ it’s just horrid. I get the dizzy thing some weeks now, the low blood sugar symptoms etc etc all my bloods were ok but cholesterol raised.  Think iv had T issue underlying and covid sparked it big time!!  Also I understand your impatience waiting and then small amounts of T3 then waiting again - I’m dreading all this when I begin to get treated - iv had to wait 3 months to get this apt in Feb, until then my life is on hold.  Sad and scandalous really how poorly the Thyroid condition is treated & understood. 
Fizz good luck with the testing and moving forward too.

[joziel]

Thanks guys... I've got bloods on Tuesday and I've now got the go-ahead to increase my T3 from Dr Conway, before getting those results back... due to how bad the symptoms are/were. However, I've just had a few good nights and faster metabolism so now I'm worried I'm going through a slightly better time and perhaps my bloods won't look too bad LOL.... I won't increase yet if I stay as I am now with the symptoms, because I'd rather get the bloods back first and use those to decide what to do.

I've also booked an appointment for a second opinion with another thyroid doctor some of you might want to check out, because he has more availability than Dr Conway. It's Dr Momi in Ireland, but he can prescribe to the UK. His website is: https://www.functionalthyroidcare.com/about-dr-momi/  Since what is going on with me isn't the most usual stuff, and since I've been given such a low dose of T3 and left to struggle along, I just want to get another opinion on it all. He came recommended by other patients in T3 groups.

[Fizwhizz]

Joziel, reading your post is just how I feel!!  I too do not want to read or hear of reasons for high reverse T3 and becoming low on T3! - iv tried so hard this past 2 years to FIX things because of these crashes and many other symptoms AND have spent huge amounts of money, it was only by putting my thyroid results on this thread and you ladies replying that I began looking into THYROID more and then Paul Robinsons input as well.  I am now at a stage where I can do very little.  The heart thing is distressing and mine can race and pound plus  the heavy head I have every morning too usually developing into a headache - I alsohave sweats every day from about 6.30am but if I increase my 75 patch I feel worse🤷‍♀️ it’s just horrid. I get the dizzy thing some weeks now, the low blood sugar symptoms etc etc all my bloods were ok but cholesterol raised.  Think iv had T issue underlying and covid sparked it big time!!  Also I understand your impatience waiting and then small amounts of T3 then waiting again - I’m dreading all this when I begin to get treated - iv had to wait 3 months to get this apt in Feb, until then my life is on hold.  Sad and scandalous really how poorly the Thyroid condition is treated & understood. 
Fizz good luck with the testing and moving forward too.

Thanks Floral. Like you I’m in limbo. I’m convinced my thyroid has been struggling for years too but obviously it’s never been outside the ‘normal range’ on bloods. Like you I have many symptoms. I’m waiting in my testing kits from Dr Conway and a March appointment. I’m tired and get dizzy spells and my muscles feel weak, like they have no strength. When you read what the thyroid hormones do it all starts to fall into place a bit more and it’s quite scary reading all the complications that can arise from not being treated. It’s awful when we know we’re not right that we aren’t listened to.

[joziel]

The sad thing is that we are the lucky ones who have been able to figure some of this out and seek the help we need from people who are able to give it, and can also afford to pay for it. There are soooooooo many people out there who just never get diagnosed and end up on strong drugs like pregabalin (which is what they wanted to put me on!) for symptoms or who get diagnosed but stuck on levo/T4 only which they can't use or convert to T3. And even if they know they need T3, they can't get it because they can't afford it. (Despite it being dirt cheap in other countries.)

It's really pretty scandalous. It's a worse situation than HRT and menopause because there are real champions for that now and it's all over the media. The thyroid thing is much quieter and not as well known...

[Fizwhizz]

The sad thing is that we are the lucky ones who have been able to figure some of this out and seek the help we need from people who are able to give it, and can also afford to pay for it. There are soooooooo many people out there who just never get diagnosed and end up on strong drugs like pregabalin (which is what they wanted to put me on!) for symptoms or who get diagnosed but stuck on levo/T4 only which they can't use or convert to T3. And even if they know they need T3, they can't get it because they can't afford it. (Despite it being dirt cheap in other countries.)

It's really pretty scandalous. It's a worse situation than HRT and menopause because there are real champions for that now and it's all over the media. The thyroid thing is much quieter and not as well known...

I agree. I feel lucky that I have an inkling that it’s my thyroid and am able to try unpick what’s going on. I had mistakenly assumed it was all menopause symptoms until I started with things like Raynuards which I just didn’t think could be connected.

[joziel]

Yes, I've had Reynauds for about 15 years now - along with the slow metabolism and cold feet, dry skin and eyes... but I just thought all that was 'me' because my TSH and T4 were always normal and my doctor wouldn't test anything else. It was only when I crashed with these severe nighttime symptoms that I realised it was related to all this stuff going on for years.

I had an excellent consultation this morning with Dr Momi in Ireland. I can highly recommend him and he has a lot of availability. He dispenses from a UK pharmacy. He was incredibly knowledgeable without being arrogant and he wants me to double my T3 use (slowly) and also to retest my saliva cortisol.

Meanwhile I had more bloods done today so we'll see what my body has been doing with the 50mcg of T4 and if it's been converting it to rT3 or able to use it...

[Fizwhizz]

Yes, I've had Reynauds for about 15 years now - along with the slow metabolism and cold feet, dry skin and eyes... but I just thought all that was 'me' because my TSH and T4 were always normal and my doctor wouldn't test anything else. It was only when I crashed with these severe nighttime symptoms that I realised it was related to all this stuff going on for years.

I had an excellent consultation this morning with Dr Momi in Ireland. I can highly recommend him and he has a lot of availability. He dispenses from a UK pharmacy. He was incredibly knowledgeable without being arrogant and he wants me to double my T3 use (slowly) and also to retest my saliva cortisol.

Meanwhile I had more bloods done today so we'll see what my body has been doing with the 50mcg of T4 and if it's been converting it to rT3 or able to use it...

Hi Joziel,

I read back through this thread. It took me a while. I saw the dreadful symptoms you listed. I’m starting with some of these myself now although not as severely. I also had dry skin, dry eyes, feeling cold, rosacea, difficult to lose weight, low mood, fatigue, low energy for years prior to menopause but didn’t really make a connection even though I have a family history of thyroid problem.

Like you my blood work always said within range and so I assumed it was all due to menopause and went off down that route instead.

My menopause symptoms I think are now controlled but my thyroid issues are ramping up. I have low appetite, get dizzy on standing, have fainted, still feel cold all the time, loss of motivation, low blood pressure, increasing cholesterol etc. It does get difficult working out what’s what though with the overlapping symptoms between menopause and hypothyroidism.

Hurrah re the T3 increase. I do hope that’s the solution for you.

[Floral]

Fizz, my symptoms mirror yours also and they ramp up - crash when I overdo anything then my cortisol and adrenaline kick in, it’s a nightmare!! so traumatic.
We are lucky yes but WE search and search for answers! we go round in circles trying to get better and that in itself is exhausting!!  The whole patient Thyroid treatment is beyond disgusting, to be left like this and having to pay and pay😡
I contacted Dr Momi before Dr Conway but because his reply went to my spam, I had already booked Dr Conway and paid, but I have him in mind😁 Good to have good reports Joz.

[Fizwhizz]

Fizz, my symptoms mirror yours also and they ramp up - crash when I overdo anything then my cortisol and adrenaline kick in, it’s a nightmare!! so traumatic.
We are lucky yes but WE search and search for answers! we go round in circles trying to get better and that in itself is exhausting!!  The whole patient Thyroid treatment is beyond disgusting, to be left like this and having to pay and pay😡
I contacted Dr Momi before Dr Conway but because his reply went to my spam, I had already booked Dr Conway and paid, but I have him in mind😁 Good to have good reports Joz.

Yes Floral, I’m familiar with that cycle of functioning then the crashing fatigue. I’ve been like that for ages but assumed it was part of my cycle. It’s getting worse now though and I just feel fatigue most of the time.

Yes, there’s so much to read, try to understand, unpick etc.

I read yesterday that the most common times for women to be diagnosed with thyroid problems are pregnancy and menopause.

I’m just on with to trying to understand more about adrenal function and the role of cortisol too.

It’s complicated and my fuzzy brain won’t always absorb the info so I have to do it in chunks.

It is a scandal that people are left in this situation.

My tests results were similar to yours if I recall with everything ‘in range’ though something I read yesterday said any TSH above 2 should be treated with suspicion and above 2.5 should be treated but obviously this isn’t how the NHS currently works. Roll on our appointments and 🤞 we get some resolution.

[joziel]

I'm trying to understand cortisol as well at the moment. I did a 4 point saliva test in April last year which everyone I showed it to, said was fine/optimal. All the results were in the green normal range.

But Dr Momi said he thought the last 2 readings were higher than they should be (late afternoon and night) and he wants me to repeat this test now. So... I'm going to give it a few weeks to increase my T3 dosage first and then I'll repeat the cortisol test. It is taking me a good 1-2 hours to fall asleep at night, so cortisol could be a factor in that. I've already tried ashwaganda and holy basil before bed last year, and those did nothing even together... but I'm going to try them again now I'm increasing my T3. Also will move zinc to nighttime as that's supposed to suppress cortisol too.

I feel like I've spent 65 million pounds on supplements these last couple of years...