hi all. This is my first post. I’ve been advised to take levothyroxine a few months ago but I couldn’t stand it. I felt like knead losing my hair and the pains in my knee/hip were unbearable. So I stopped.
Had blood tests done this week and they insist I take levothyroxine again and tell me it’s not that tablets giving me the pains. (The pain goes when not on them)
My T3 is 0.94
My T4 is 39.41
Mr TSH is 13.27
Anyone have any advice for me?
Yes. Take the levo. You are very hypo with a TSH of over 13. 
The other two results are meaningless because you haven't given the ranges. Please, always give ranges when giving results because ranges vary from lab to lab.
But, I think we need more information before being able to give any advice:
* How much levo were you prescribed?
* How did you take it - empty stomach? An hour before food and any drink other than water?
* What brand levo were you given?
* What symptoms did you have before you started levo?
* For how long did you take it?
* Did you have antibodies and/or nutrients tested: vit D, vit B12, folate, ferritin? These all need to be optimal to be able to tolerate thyroid hormone replacement, and for it to do its job.
I don't know how much you know about hypothyroidism, but it's a very serious condition. Thyroid hormone is needed by every single cell in the body to be able to function correctly. When there's not enough to go round, it causes a lot of varied symptoms - some that you wouldn't necessarily associate with the thyroid.
The brain and the heart especially need a lot of thyroid hormone, so if they don't get enough you can suffer from a lot of brain symptoms (depression, anxiety, loss of memory, etc.) and heart symptoms (rapid heart beat, palpitations, etc.). So, if your thyroid can no-longer make enough hormone for your needs, it is essential to replace it.
A few 'facts' about taking levo:
* For maximum absorption, Levo should be taken on an empty stomach, two hours after food/coffee or one hour before. There should be a gap of at least two hours between thyroid hormone and any other medication or supplements - four hours for iron, calcium, magnesium, vit D, PPIs or oestrogen.
* It often happens that when you start taking levo, new hypo symptoms appear, or old ones exacerbate.
* We should only test after at least six weeks on a steady daily dose. Four weeks is too soon, changes in levels can still occur up to six or eight weeks.
* Often when we start an increased dose, we feel well for a while - or start to feel better after a week or so - and then the symptoms start to come back. This does not mean the levo has 'stopped working' or that it's not right for you, it just means that it is time for another increase.
* When going for a blood draw, always leave a gap of 24 hours between your last dose of levo and the blood draw.
* It’s a well-known fact that stopping levo, for whatever reason, will make you feel wonderfully well. So much so that people believe it’s proof that they didn’t need it. But, this is just a temporary effect. Sooner or later the hypo symptoms will come creeping back in until you are forced to go back on levo again. It happens to the majority of people that stop levo.
* When giving blood test results, please include the ranges because they vary from lab to lab, and we need the ranges that go with your results.
That’s for that answer. So nice to speak to someone who understands!
So originally back in Feb I went to the GP feeling crap. Tired, sad, heavy periods. They tested my thyroid and lots of other bloods but said they thought it was all due to having Covid a few months before. (Not sure why).
Anyway bloods came back all ok.
A few weeks later I went to the Gynecologist. She said she thought it was thyroid so referred me to an endocrinologist. He was, for want of a better word, quite ‘wacky’ and said even though my TSH and T3 and T4 were within range, he believed I needed thyroxine. He said so many women need it. He prescribed Euthyrox 50ug. Once a day in the morning an hour before drinking/eating.
Now, after a month of taking it I lost so much hair I was quite frightened. I also started having this unbearable pain at night time I’m my knee/thigh. The weirdest thing.
I stopped taking the Euthyrox as I wasn’t too convinced and thought well it’s not out of range so…
Fast forward to last week and I had gained 10lb in about 3 weeks. Nothing had changed diet or exercise wise. Tiredness ridiculous. Puffy face and weird eyes.
So I went to another GP. She did T3 T4 and TSH but said it was just my age (43) and doubted I had a thyroid problem.
Results came back
T3 0.95 range 0.98- 2.33
T4 39.41 range 62.67 - 150.84
TSH 13.267 range 0.34 - 4.94
These dropped massively since Feb.
Im now worried (as I have no clue) did I do that to myself by taking thyroxine unnecessarily? Is that even possible.
GP has emailed me to tell me to start taking the Euthyrox again. Start on 50 for 2 weeks then for to 75, then re test in 6 weeks.
When did you stop taking levo? How long was it after that you had the second blood test?
About 5 weeks after I stopped taking it I had the blood tests.
I'm far from an expert but I suspect your tsh is lower not because you didn't need it but because your body hasn't quite caught on to the fact there's no more levo coming.
If you're really adverse to going back on levo, which I think you desperately need to be on, is to monitor your symptoms and when they get worse try again.
I don't think you're going to regain your health until you're on levo. Hypothyroidism is incidious. I didn't realise how desperately unwell I was until I was better. Everything was a fight and I felt worse for ages on levo.
Perhaps starting at a higher dose might help?
I started taking it again yesterday morning…. So will keep with it this time and see what happens. Just feel so confused that this all happened in the space of 6 months.
He was, for want of a better word, quite ‘wacky’ and said even though my TSH and T3 and T4 were within range, he believed I needed thyroxine.
Sensible man! Ranges are only a rough guide. They're also much too wide. So, just being 'in-range' is far from being the same as 'optimal'. Very few doctors understand that. So, hang onto that endo, he's good - until proven otherwise!
Now, after a month of taking it I lost so much hair
Yes, that can happen when you first start levo, because it increases levels of the bad testosterone - whose name I can never remember! But, it should only be temporary.
To countract that effect, you could try taking Evening Primrose Oil and Borage oil.
But, I don't know about the hip/thigh pain. That's weird.
Fast forward to last week and I had gained 10lb in about 3 weeks. Nothing had changed diet or exercise wise. Tiredness ridiculous. Puffy face and weird eyes.
All hypo symptoms!
T3 0.95 range 0.98- 2.33
T4 39.41 range 62.67 - 150.84
Are these tests Free T3 and Free T4? The ranges look as if they might be Total T3 and Total T4, which aren't very helpful tests. But, you can see that now, they are both very under-range, so that's not good!
These dropped massively since Feb.
Hence the need to test antibodies,
Im now worried (as I have no clue) did I do that to myself by taking thyroxine unnecessarily? Is that even possible.
No, that's not even possible. Rest assured, you didn't do this to yourself.
Hi Sppr, welcome to the forum.
You’ve been given excellent advice by greygoose , so please do take the Levothyroxine. You need thyroid medication to improve your health. If you are sensitive to ingredients in a particular brand of Levothyroxine (eg fillers), you can always ask your GP to try another. Your TSH needs to be under 3 and many members don’t feel well until TSH is less than 1.
What dose of Levothyroxine have you been prescribed?
Can you supply the ranges for your tests (as these can vary between laboratories)?
Lots of us also felt worse before we felt better when first taking levo.
I'd try pushing through until you're on a full replacement dose which is likely to be between 100mcg and 200mcg.
Request GP test vitamin D, folate, B12 and full iron panel test for anaemia
Low vitamin levels are EXTREMELY common when hypothyroid
Heavy periods also tend to result in anaemia
Improving low vitamin levels is essential to help tolerate levothyroxine
Have you had thyroid antibodies tested
About 90% of primary hypothyroidism is autoimmune thyroid disease usually diagnosed by high thyroid antibodies
Which brand of levothyroxine have you tried
Many people don’t tolerate Teva brand
But it’s also important to be on high enough dose
Generally we start on 50mcg levothyroxine, retest after 6-8 weeks, increase by 25mcg …..etc
Likely to eventually need at least 100mcg levothyroxine per day, unless extremely petite
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
My thyroid antibodies are high. 295
So high thyroid antibodies confirms autoimmune thyroid disease
GP should also test for coeliac disease
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
Sppr,
Welcome to our forum,
Some people are intolerant to certain fillers in Levo tablets, but because you have started losing hair as well I think both hair loss & joint pain are more likely caused by large hormonal changes to possible long term deficiencies. No hormone works in isolation and these deficiencies & changes will be filtering out effecting many other bodily systems.
To ensure Levo can do its job well you need optimised VitB12, folate, Vit D and iron. The demand for iron often increases with the faster metabolism induced by the introduction of Levo. Low iron is a common cause of hair loss so ask your GP to test your ferritin levels.
Also have you had thyroid antibodies TPOAb & TGAb tested ? High levels will mean you have Hashimotos and the accompanying inflammation can make all sorts of stuff go wrong meaning we often need a different approach.
It is difficult to assess your hormone levels because you haven't supplied ranges to 'free' results but your TSH shows you are clearly hypothyroid and those missing thyroid hormones will need replacing. Your doctor was considering your having COVID because it has caused some people thyroid issues. However, these issues still need addressing.
The longer you refuse to take Levothyroxine the more damage is being inflicted and the longer recovery will take when you eventually decide to take it. The forum is terrible supportive because we have all been through it at some stage 😊.
Please add country you live in on profile
Looking at brand levothyroxine prescribed…..probably not in U.K.?
United Arab emirates. From the UK but living here at the moment.
Welcome Sppr .....congratulate yourself on arriving here!!
You've already had excellent advice so I'm just strongly encouraging you to follow it!
I'm not surprised you feel worse when you start on levo your body is currently seriously lacking thyroid hormones essential to good health
Before you feel better your body has to adjust to the addition of replacement hormones.
This adjustment has been temporarily upsetting your system....
It's just the way the body works
Im now worried (as I have no clue) did I do that to myself by taking thyroxine unnecessarily? Is that even possible.
You can stop worrying!!
You absolutely have done yourself no harm
The extra pain is most likely that adjustment
Unfortunately there is no quick fix for hypothyroidism ( think headache/ paracetamol)
It may take several weeks ( months even) to experience any improvement/recovery.
You will need to follow a ....
(test
Increase dose
wait 6/8 weeks
test again)
protocol until you feel better and your numbers improve
FT4 and FT3 should be approaching 75% through the reference range....
With the caveat that we are all different and this will vary slightly from person to person.
TSH should sit around 1 when medicated
How you feel is as important as lab results!!
Stick with it....slow and steady is the way to go
It will be worth the wait to feel better!
Come back with any questions or concerns you have
We are all in this together and most of us will have experienced similar reactions....you are not alone.
Good luck
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