Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Penelope]

Hi Wrensong thank you for asking.
I am plodding along nicely still in shock about the hole thing really and I find it hard to believe being on the hormone replacement therapy is going to put an end to a 26 year illness.My husband reminds me to keep my chin up.
I have told all my friends about my diagnosis.And they all headed off to the doctor to get the tests.
One doctor told my friend no you don't need those and the other was told we already know you have a thyroid issue and would not give her the antibodies test!Another friend got the antibodies test and it came back positive for Hashimoto's.
Sent my son to get his tests and he was told no.So he went on to another doctor and got them they were all normal but his T4 was high up on the normal range.So that explains his depression and insomnia for the last 4 years.
It's all such a learning curve.

[Kathleen]

Hello again ladies.

Penelope -   so pleased that you are getting the word out regarding Thyroid testing.

I've read that mood swings can occur with a low Thyroid condition but I wasn't aware that depression and insomnia are linked to a high T4 result as in the case of your son. Makes you wonder if taking a  thyroxine  medication for hypothyroidism is a good idea as it might make you hyperthyroid and feel just as bad!  Any thoughts on how to get the balance right?

Wishing you well.

K.

[Penelope]

Hi Kathleen I'm really not sure I'm trying to figure that out I am not a doctor and should not have to do all this.But I do.

Sleep is very much a thyroid thing waking and not being able to get back to sleep and also insomnia my son just lies there till 3 in the morning.

Mental health is not in crisis around the world undiagnosed THYROID....patients are in crises.Thyroid can cause depression,anxiety,Panic attacks,Heart palpitations,and induce phsycotic episodes.

It's actually scary stuff I can't imagine  the people that have committed  suicide and they just needed there thyroid to be taken care off.I feel like we all need to be out on the streets protesting about all this.😔

At least all of us on here can be aware and pass it on to our loved ones.

[Wrensong]

Hi Penelope,

I am plodding along nicely still in shock about the hole thing really and I find it hard to believe being on the hormone replacement therapy is going to put an end to a 26 year illness.My husband reminds me to keep my chin up.

Glad to hear you are doing OK, but that you were unwell for so long without effective treatment is horrifying.  I'm so sorry.  It's only natural your diagnosis will have been a shock, but if by "being on the hormone replacement therapy" you mean Thyroxine to treat a thyroid condition, this should go a long way to helping you feel a whole lot better, both physically & mentally.   I so hope the future will be a great deal brighter for you.   

Kathleen,

I wasn't aware that depression and insomnia are linked to a high T4 result as in the case of your son. Makes you wonder if taking a  thyroxine  medication for hypothyroidism is a good idea as it might make you hyperthyroid and feel just as bad!  Any thoughts on how to get the balance right?

Insomnia can indeed be linked to high T4 when it's above top of ref range as in hyperthyroidsim, but I'm not sure it would be a factor with a T4 within range, though it seems feasible if it's increasing, suggestive of autoimmune activity & a developing thyroid condition, especially if the T4 were significantly higher than normal for that individual &/or very close to top of ref range. 

Thyroid hormone blood levels vary day by day & at different times of day, so in my experience it's unusual to get the same blood results twice in a row, even on stable doses of thyroid medication.

Thyroid meds are essential to treat diagnosed hypothyroidism, so yes, a very good idea!  Careful monitoring with regular blood tests & importantly taking into consideration how the patient feels, should prevent inadvertent over-treatment continuing for any length of time, which as you rightly say, can result in hyperthyroid symptoms.  These can be difficult to distinguish from some menopause symptoms - overheating, insomnia, palpitations, anxiety - but it's easy to check whether our thyroid medication needs adjusting with a TFT. 

At middle age & beyond, some people feel more comfortable taking a slightly lower dose that gives a TSH mid-range, whereas in younger years we more often need to ensure TSH doesn't go above 1-2 in order to feel well.  You will get used to what feels right for you, so please don't worry, but do flag up with your GP anything you're unsure about. 
Wx

[Penelope]

Hi Wrensong I am not on thyroid medication the go to medication for Hashimoto's just happens to be HRT so fingers crossed.

Wrensong my husband and I are also horrified at how long I have been so ill and so ignored.The problem I think is once you mention anxiety they send you straight to mental health done dusted and labeled.

[Kathleen]

Hello again ladies

Penelope - given your experiences I am not surprised that you are passionate about the treatment and mistreatment of Thyroid disease and I admire your commitment to helping others.

Wrensong -  thank you so much for your comments. I've been busy researching the whole subject and feel a bit out of my depth at the moment. I think as with the menopause I just want to believe that I will feel normal again in the future.  Gotta say that feels like a big ask at the moment!

Thanks again ladies and if I come across anything that will help others I will be sure to post about it.

Take care.

K.

[Penelope]

Thanks Kathleen I hear you it is so overwhelming I used to go through all the symptoms and say to myself but I don't have that one.And I honestly believed my doctors well I mean who wouldn't.Man did I get that wrong.
There is so much to say about women's intuition We deep down inside no how we feel.
I am passionate Kathleen Women feel they have come so far in the world and we have but medically we are just in the to hard basket.If so many men had our issues money would have been thrown at it left right and centre.
Oh that's right is was a man who put millions of women off HRT in one night!xxoo

[Penelope]

Thyroid disease is more common than diabetes and heart disease. The World Health Organisation puts the world's population of diagnosed thyroid patients at >750 million. New Zealand's diagnosed population is >146,233. Many more are misdiagnosed or experience mismanaged care. Common symptoms include debilitating unexplained fatigue, unexpected weight gain/loss, depression, miscarriage, cold/heat intolerance and brain fog. Left untreated thyroid disease influences the onset of other diseases such as cancer, heart disease, and dementia; and in some cases early death.

In the 1940s and 1950s doctors and endocrinologists diagnosed on signs and symptoms, prescribing treatments that worked. Then came the arrival of the TSH blood test and a synthetic drug called Levothyroxine which changed the way many doctors and endocrinologists diagnose and treat patients. As a result there is a large number of patients for whom these diagnostic and treatment approaches do not work. For example, all too often:

- Doctors and endocrinologists miss altogether or misdiagnose thyroid disease in patients because they don't recognise the signs and symptoms. Patients are often tested unnecessarily for other illnesses imposing cost on them and District Health Boards.

- Patients who are prescribed Levothyroxine often experience ongoing symptoms. Alternative thyroid treatments containing a thyroid hormone called T3 work better for many of these patients. Most are never offered this treatment even though it is available, safe and effective.

It is now difficult to find a NZ doctor or endocrinologist with the right knowledge to help thyroid patients. Those NZ doctors who are successfully diagnosing and treating thyroid disease need greater support; and the other doctors and endocrinologists need further education.

[Wrensong]

Penelope, I'm not sure I understand this:-

I am not on thyroid medication the go to medication for Hashimoto's just happens to be HRT so fingers crossed.

Are you saying that you are not hypothyroid but have thyroid antibodies & have been told that sex hormone replacement (oestrogen, progesterone) will prevent progression to hypothyroidism?

Kathleen

I've been busy researching the whole subject and feel a bit out of my depth at the moment. I think as with the menopause I just want to believe that I will feel normal again in the future.

I hear you: the endocrine system is so horribly complex.  All interrelated, with various feedback mechanisms that make trying to understand how it works incredibly challenging.  I think you need a brain the size of a planet to be an Endocrinologist so have no doubt I'm onto a loser there!  I like to try to understand as much as I can of the basics though, partly to be aware of any self-help measures I can take, but also in hope of being well enough informed that I can be involved in decisions about my care.  There's also a sense of responsibility to those medics who are trying their best to treat me.  I want it to be a partnership in which I have some say & knowledge is power in that respect!

I completely get what you say about wanting to feel normal again.  That's a difficult one to reply to - the best I can say is that I think when your optimal dose of thyroid replacement has been established & you've been on that for a while, so that any cumulative effects from its earlier deficiency have been addressed, you should feel your health has improved - hopefully considerably.  At this stage of our lives we're all struggling to work out what the new normal is & with other chronic health conditions ongoing in addition to menopause, what the best new normal will be is perhaps a bigger unknown for us.  Thyroxine should go a long way to helping your hypothyroidism & many patients seem to feel very well on it.  The few of us who need T3 as well have a more complicated time of it, but with the right balance of both hormones it is possible to have a life!

Stellajane,

I worked with a woman who also had Hashimotos and we were both in agreement that taking a bit too much Thyroxine is really horrible - you feel as though your body is racing.

I couldn't agree more - when it's been necessary to adjust doses of thyroid hormone over the years, I've occasionally been temporarily on too much.  It is a horrible feeling & something to be corrected as soon as poss.
  ladies Wx

[Kathleen]

Hello again ladies

Wrensong - thank you for your interest and valuable comments.  I hear you about the ' new normal' challenge that we face at this time in our lives. I've become obsessed with worrying about my various hormones and how to balance them! My close friend who has had Hashimoto's for twenty six years hasn't had any major problems and is doing well on Levothyroxine. She knows when the dose needs tweaking which has happened a few times.

Penelope - like Wrensong I'm a bit confused by your comment. I'm new to all this so forgive me but I assumed the only way to treat hypothyroidism was to replace the missing hormone thyroxine. Here in the UK the standard drug is called Levothyroxine and that is what I've been given to take. As I've said before I will be having my Thyroid levels test again in about four weeks and I haven't been on any HRT, ie oestrogen or progesterone for six months.

Wishing you well ladies.

K.
 

[Penelope]

Hope this helps



There is a single treatment for Hashimoto's thyroiditis: thyroid hormone replacement therapy. Though it's the only treatment available for this thyroid disorder, it's the only one you'll need. Thyroid hormone replacement therapy is highly effective at treating hypothyroidism associated with Hashimoto's thyroiditis.

Hashimoto's thyroiditis may impair your thyroid's ability to make a healthy amount of thyroid hormone. What thyroid hormone replacement therapy does is provide your body with the necessary thyroid hormones it needs.

[Baby]

Hi all. I had my tsh tested in August.it came back at 4.5.doc said that was fine even though I felt awful. Had bloods done five  weeks ago to check again because i have been reading about the connection between meno and thyroid. Anyway tsh came back at 5.52.i had bloods done at half five tea time.doc never told me they would be done in the morning. Any way he said I was borderline hypo and agreed to start me on 25 microgram a day. Still not feeling very good.  I have an appointment to see him again in 9 days so went to doc reception today to request my blood form also saying I need to check ct4 f23 etc.she was not happy.she said it wasn't on my file to have bloods done and she would have to speak to the doctor about these blood tests I want. She asked where I had got my information from to ask for these tests. I told her thyroid UK. Our NHS is getting worse. Think I might end up having to pay private for my tests.

[Wrensong]

Hi Penelope, gosh I'm completely confused now!  Yes, thyroid replacement is indeed the appropriate form of treatment for hypothyroidism, but I'm not sure how your last post fits with what you posted previously:-

I am not on thyroid medication the go to medication for Hashimoto's just happens to be HRT so fingers crossed.

Sorry if I'm being really dense here, but can you help me understand what you mean please?
Wx

[Wrensong]

Kathleen

I've become obsessed with worrying about my various hormones and how to balance them!

A very sane response if I may say so   You & me both 

No seriously, once your maintenance Thyroxine dose has been established & your body's had time to reset having been deficient for a while before diagnosis, you really should feel a great deal better.  Meanwhile, all you can do is tell yourself Thyroxine is what my body needs & wait for the little white pills to work their magic.  If after a reasonable time your menopause symptoms are still demanding attention you can rethink what you'd like to do about that in the knowledge your thyroid's been taken care of.  So glad you have your friend's example for reassurance.  Every reason to think you will do just as well.  Sorry - I know I've said much of this before  , just I know what an anxious time it can be when we're newly diagnosed with a chronic condition & I don't want you to worry unnecessarily.
Wx

[Wrensong]

Hi Baby
 
Sorry to hear you've been feeling poorly.  Not sure how long you've been on the 25mcg dose of Thyroxine, though somewhere under 5 weeks I understand.  It will take a while for your body to feel the benefits of replacement & it may be that you will need your dose changing when your GP retests.  When a patient is first started on thyroid replacement it's usual to retest after about 6 weeks.  The same after any later change of dosage. 

I'm afraid the NHS often only tests TSH & sometimes T4 levels, less often T3, unless there is good reason to think a patient's condition is more complicated than straightforward hypothyroidism. 

If you continue to feel unwell with hypothyroid symptoms after you've been on Thyroxine for what you & your GP feel is a reasonable time & your TSH is low enough to suggest your symptoms should be well-controlled, I would ask your GP to test that you are converting Thyroxine into its usable form.  The Free T3 level should give an indication of this.

I think it's encouraging that your GP was open to a trial of Thyroxine when your TSH was around the top of the ref range rather than making you wait for it to go significantly higher  .  That suggests you should be able to cultivate a good partnership with them, so I wouldn't worry about the receptionist querying your request for more bloods at this stage.  You can ask your GP in person if you feel these are necessary later.

Please keep posting if we can help in any way - there are several of us on thyroid medication here.  I do hope you soon start to feel much better. 
Wx