I have a low TSH and low T4. (TSH hovers around 0.2) I’ve been on 75mcg Thyroxine for 20 years. My blood levels continue to go down but GPs have been instructed to only consider the TSH and not T4 therefore when I have my bloods done and go to my GP they are keen to reduce the dose. I tried this once and after 2 weeks I couldn’t get out of bed and was crying all the time, I promptly went back to my original dose.
My question is: if the body is used to taking thyroxine over a length of time (in my case 20 years) how can the pituitary gland suddenly gear up and produce my TSH if there is less thyroxine being taken?
Also: even though I feel tired all the time and have some under active thyroid symptoms I have noticed my pulse is higher during the night (I have a Fitbit!) and I’m very hot, I am also exercise intolerant, My heart beat is pounding during mild exercise where I was once very fit.
I am 60 and due to a surgical menopause at 45 I have had an oestrogen patch for 15 years.
I would appreciate any comments on this please
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Countrylou
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I really would prefer all of these doctors/GPs to have a refresher course run by Healthunlocked and thyroiduk re treating hypothyroid patients. TUK have some good Advisers.
Let's face it - the medical professionals seem to be the least learned when it comes to diagnosing or restoring their patients health and removing all of the disabling symptoms.
Doctors are completely unaware what they are doing to their patients health by adjusting their dose of thyroid hormones to 'fit' the results into a range particular TSH..
We do not want to be in a 'range'. We want a TSH to be 1 or lower with a Free T4 and Free T3 in the upper part of the ranges. The latter two, as you are probably aware, are rarely tested and the poor, sick patients struggles on, and on and on.
We have to educate ourselves by reading posts on this forum and learning how best for us to recover our health and be symptoms free. Doctors are apt to treat a 'symptom' with another unconnected prescription for the 'symptom' alone and not taking into account that it is a 'hypo' symptom.
If your dose is too low it might be that your heart is struggling for want of T3 in your body. Levothyroxine is an inactive hormone, i.e. T4. T4 has to convert to T3 and it is T3 which runs our whole metabolism, if we don't have sufficient th our body struggles.
What you need is a 'Full Thyroid Function Test' or get a private blood test from one of the recommended labs. I doubt that your Free T4 and Free T3 are optimum and our heart and brain need the most T3. T4 is inactive - it has to convert to T3. If we don't have sufficient T3 our heart can struggle (as well as everything else in our body) , especially at night I think. Bear in mind that I'm also not medically qualified but have run the gauntlet like the majority on this forum until Thyroiduk.org.uk (before this forum began) made sense to me.
A Full Blood Test is:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
GP should test B12, Vit d, iron, ferritin and folate.
All blood tests for thyroid hormones should be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your dose of levo and the test and take afterwards.
Always get a print-out of your results, with the ranges, for your own records and post if you have a query. Ranges are important for members to comment. Labs differ - just to make things a bit more awkward.
If you've not had a Full Blood Test for a while, ask GP - he probably wont but there are private labs that will do a Full one for you and it is a home finger pruck test and it is done at home and posted to the lab. Make sure you are well hydrated a couple of days before. and you post it back to them. Put your results, with the ranges onto a new post for comments. Follow procedure for blood draw above.
You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies checked.
GP should test B12, Vit D, iron, ferritin and folate.
Put your results onto a new post with the ranges and members will comment.
We can restore our health by comments from members, the majority who know far more than the medical professionals.
The aim is a TSH of 1 or lower with Free T4 and Free T3 in the upper part of the ranges. All vitamins/minerals have to be optimal and members are good at advising about how to get these restored.
Did you get your Vit D, Folate and Ferritin tested as suggested by SlowDragon ? As you are having B12 injections there's a good chance that these nutrients could also be low.
Have you had antibodies tested?
Have you considered natural progesterone cream instead of HRT, as suggested, which is the answer for many of us at our age. I found that this reduced my sweating in bed.
As for your TSH level, it was just below range but not suppressed back in November. I started getting problems after 25 years on Levo back in 2000, I was on a higher dose than you, my FT4 was over range and TSH below range but I had felt well on that dose up until then. What I eventually discovered, after another 15 years of struggling, was that after so long TSH is going to stay low, but I also had severe Vit D deficiency, low folate and ferritin, my adrenals were struggling and sex hormones were also low, plus I had poor conversion of T4 to T3 (which you currently do not have).
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org
In your position, I would re-visit your previous post and look through the replies again, test Vit D, Folate, Ferritin, maybe also test adrenals and sex hormones, and consider what Dr Toft has said because I think you could do with an increase in your dose of Levo at this stage.
I went to my GP who (in my 5 minute slot) looked at the TSH and wanted to reduce the thyroxine to 50mcg he seemed to think this would resolve all my health issues.
I will go back and ask for the full range of thyroid blood tests. I have supplemented all winter and still now with Vit D spray.
I am really worried about the oestrogen patch as my mum had a terrible menopause and now my sister is going through it, at 60 and 15 years later I’ve been really well on it.
I am on B12 and inject weekly to stop the migraines, this seems to work.
However I will revisit the last post and have another look at the replies, as a patient I feel at the complete mercy of my surgery who look at a computer screen (not me) at some numbers and send me on my way with no help at all.
I understand that all the hormones work together and everything has to synchronise, I do get really confused by it all though 😕
I have supplemented all winter and still now with Vit D spray.
But did you test first and know what you needed to supplement, and at what dose? No point in supplementing unless you know what you need - you could either be wasting your money by supplementing unnecessarily and with Vit D and Ferritin any excess is stored and will cause problems, or you could be taking too little to help. Testing is essential.
Also, Vit D supplement has cofactors which are very important - D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
I agree with all that shaws and seaside Susie have said. I was on levo only for 11 years and really struggled 5 years in when my antibodies shot up. Thanks to this fantastic site and very knowledgeable people I learned about poor vitamin levels and their affects and also how important a gluten free diet was to suppress antibodies. I use Medichecks blood tests regularly and I am very lucky I can afford to pay. Have never relied on GP to do any testing that is meaningful!
I began to have serious overheating problems at night and dry skin and constipation reared their ugly head again.(In spite of in range Tsh (just) T4 and T3) I read some more on here and decided T3 was the way forward, two years ago. My TSH was very suppressed (even before the T3 was added) but my T3 was very low in the range and T4 only mid range. I decided I was a poor converter. I ignored my GP, who eventually sent me to an Endo who sort of accepted I might need T3. I now take 100mcg levo and 15mcg T3 and feel much better. I get a private scrip from GP and order from a German pharmacy. I am not happy that I have to pay £50 for my meds (£1000 in UK) but I am pleased to have my life back.
I added T3 in very slowly but you really MUST ensure that all your vitamin levels are optimal as per advice from Seaside Susie and if you have raised antibodies then do try GF diet, a lot easier now than it used to be. Hope things improve for you.
You very likely need to see recommended thyroid specialist endocrinologist
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
You need vitamins tested and essential to test FT3 as well as FT4
Likely to need dose increase in Levothyroxine and/or addition of small dose of T3 as well
First step is to get full Thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Since starting this thread earlier today, I have looked at my previous blood tests (every year for the last 14 years) TSH was 0.46 in 2005 and got as low as 0.15 in 2013 and 2014, it stays between those two levels. The T4 started around the 17/18 level but has been slowly dropping to between 11 and 12 over the last two years.
I am confused because at night I am over heated and my pulse is definitely faster and I am restless and unable to sleep soundly... the opposite of hypothyroidism.
My GP says I’m on too much thyroxine which has been 75mcg for years and also I need to reduce my oestrogen patch.
I see a herbalist every 3 months and take herbal supplements, vitamins and minerals. He accurately told me I was B12 deficient and for the last 3 visits he’s told me I am hypothyroid and need to increase my dose. He uses a EIS body scan which has proved to be 100% accurate.
I seem to get nowhere speaking to my GP but I am seeing him next week so will raise the issue again.
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