Hello, I posted recently on behalf of daughter, she was told she does not have autoimmune thyroid disease by her endo and GP. She called me this morning and said her stomach has been cramping and aching. She said she can feel lumps in her stomach and she said she gets like this when she is constipated. I am wondering if she needs T3 added back in since she had none of this when on it.
Thanks in advance.
TSH 7.3 (0.2 - 4.2)
Free T4 13.9 (12 - 22)
Free T3 3.4 (3.1 - 6.8)
TPO antibody 378 (<34)
TG antibody 299.5 (<115
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Julie1166
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You know from your other threads that your daughter definitely does have autoimmune thyroid disease aka Hashimoto's, and you've been given advice about that.
I've had a quick look back at your other threads and can't see anywhere that you've mentioned that she was taking T3.
Why not post all relevant information. Past test results and the amount of Levo she was on. Any changes to dose and test results following the changes. Show where T3 was added in, the results when on it. Show when T3 was removed, explain why, show results after it was removed.
If we haven't got all the relevant information we may not necessarily be giving the most appropriate suggestions.
For the constipation, what's she doing about it? How about:
More fibre in her diet
Ortis Fruits and Fibres Cubes dolphinfitness.co.uk/en/ort... - make sure it's that exact one, it's the only one that doesn't contain Senna
Magnesium Citrate - if she gets the powder form - Natural Calm Vitality Magnesium Citrate powder then she can build up gradually
Lots of Vit C in divided doses throughout the day, can be taken to bowel tolerance. Dr Myhill recommends 2000mg before bed for a bowel movement next morning. That didn't work for me but magnesium citrate does.
Thanks for reply she doesn’t take anything for the laxatives all the time but takes Laxido as a short term fix. She was sent home from hospital one day with Movicol because the constipation was so bad it was pressing on nerves in her back and she had pain all down her leg. Her manager wouldn’t let her go to the GP about this when she had problems mobilising at work.
All doses below.
October 2017 (150mcg levothyroxine now increased to 175mcg levothyroxine)
TSH 7.3 (0.2 - 4.2)
Free T4 13.9 (12 - 22)
Free T3 3.4 (3.1 - 6.8)
TPO antibody 378 (<34)
TG antibody 299.5 (<115)
August 2017 (150mcg levothyroxine then reduced to 100mcg levothyroxine because of below range TSH)
TSH 0.03 (0.2 – 4.2)
Free T4 21.4 (12 – 22)
Free T3 4.1 (3.1 – 6.8)
June 2017 (200mcg levothyroxine and 20mcg T3 – T3 taken away and levothyroxine reduced to 150mcg due to thyrotoxic levels)
TSH <0.02 (0.2 – 4.2)
Free T4 22.8 (12 – 22)
Free T3 4.7 (3.1 – 6.8)
January 2017 (175mcg levothyroxine increased to 200mcg levothyroxine due to ongoing symptoms, T3 increased to 20mcg from 10mcg)
TSH 1.60 (0.2 – 4.2)
Free T4 15.9 (12 – 22)
Free T3 4.5 (3.1 – 6.8)
November 2016 (175mcg levothyroxine and 10mcg T3 kept the same)
TSH 3.60 (0.2 – 4.2)
Free T4 16.2 (12 – 22)
Free T3 5.0 (3.1 – 6.8)
May 2016 (100mcg levothyroxine increased to 175mcg levothyroxine and 10mcg T3 kept the same)
TSH 3.86 (0.2 – 4.2)
Free T4 13.3 (12 – 22)
Free T3 4.2 (3.1 – 6.8)
February 2016 (25mcg levothyroxine increased to 100mcg levothyroxine and 10mcg T3 reinstated after results)
TSH 7.40 (0.2 – 4.2)
Free T4 12.9 (12 – 22)
Free T3 4.3 (3.1 – 6.8)
January 2016 (75mcg levothyroxine and 10mcg T3 – T3 taken away and levothyroxine reduced to 25mcg due to thyrotoxic levels)
TSH 0.02 (0.2 – 4.2)
Free T4 22.3 (12 – 22)
Free T3 4.8 (3.1 – 6.8)
November 2015 (75mcg levothyroxine and T3 10mcg)
TSH <0.02 (0.2 – 4.2)
Free T4 20.3 (12 – 22)
Free T3 5.3 (3.1 – 6.8)
September 2015 (75mcg levothyroxine and T3 started 10mcg)
OK, starting at August 2015 when she was taking 175mcg Levo, her results definitely showed she needed the T3 added. However, to reduce from 175mcg Levo to 75mcg Levo plus 10mcg T3 (roughly equivalent to 30mcg Levo), she actually ended up with a reduction in dose (175 down to 105 approx).
Despite the reduction her September/November 2015 results were good. Did she feel well at this level?
January 2016 and it looks like the endo proved he didn't know what he was doing.
TSH 0.02 (0.2 – 4.2)
Free T4 22.3 (12 – 22)
Free T3 4.8 (3.1 – 6.8) 75mcg levothyroxine and 10mcg T3
The only thing wrong with those results was that her FT3 had dropped. Her levels weren't thyrotoxic at all, she wasn't overmedicated. See thyroiduk.org.uk/tuk/about_... Treatment Options:
According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.
The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.
Also -
Dr Toft states in Pulse Magazine, "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)." She
can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show her doctor.
If her doctor questions where she is getting her information from the answer is not 'the internet' or 'a thyroid forum' but 'from NHS Choices recommended source of information about thyroid disorders' (which is the charity Thyroid UK).
So there was no need to take away T3 and reduce Levo to 25mcg. That was sheer stupidity on the endo's part. We're dealing with hormones here, changes should be gradual. The endo proved he knows nothing about treating hypothyroidism.
In February 2016, as expected her TSH shot up way over range and FT4 plummeted, so instead of increasing from 25mcg gradually the endo stupidly raised the dose to 100mcg Lelvo plus 10mcg T3, so the equivalent of 130mcg Levo from 25mcg. Sheer madness!
Again in May 2016 another massive increase of 75mcg Levo to 175 Levo/10T3.
January 2017 and both Levo increased to 200mcg and T3 to 20mcg. It would have been better to do one at a time.
Then in June 2017 with these results
TSH <0.02 (0.2 – 4.2)
Free T4 22.8 (12 – 22)
Free T3 4.7 (3.1 – 6.8)
another massive reduction of 50mcg Levo plus 20mcg T3 removed because the endo thinks her levels are thyrotoxic. What should have happened was reduce the Levo only, get the FT4 down then see what happened to the FT3.
August 2017 results show that the T3 should have been given back (shouldn't have been removed in the first place due to low FT3) and as already mentioned a below range TSH is acceptable.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
So TSH is completely irrelevant when on thyroid meds. Unfortunately doctors don't appear to understand how this works.
It looks as though somewhere her dose was then raised from 100mcg to 150mcg and she ends up with this in October 2017 on 150mcg Levo only
TSH 7.3 (0.2 - 4.2)
Free T4 13.9 (12 - 22)
Free T3 3.4 (3.1 - 6.8)
and again she is way over range for TSH with an extremely low FT4 and FT3 so now has an increase to 175mcg Levo yet adding T3 back in is clearly indicated.
The problems here are:
1) The endo hasn't got a clue. He's probably a diabetes specialist who is playing at pretending to know how to treat hypothyroidism.
2) She has Hashi's (and yes, she very definitely has) and the endo doesn't know what Hashi's does and how it can cause fluctuations.
3) The massive dose reductions and removal of T3 will have played a part in her low nutrients and these now must be addressed. I will go back to the other thread and see if there is anything I can add.
4) The NHS are trying to de-prescribe T3 and are taking it away because of cost, but they are lying about that, instead of giving the real reason they are saying things like it's not proved to be helping, etc.
What your daughter needs to do now is:
1) Sack the endo. Find another one - a thyroid specialist not a diabetes specialist, one who knows about Hashi's. Email louise.roberts@thyroiduk.org for a list of thyroid friendly endos then ask on the forum for feedback of any you can get to. Many members here would suggest not even bothering with an endo because the collective knowledge on the forum is far more than most endos have.
2) Try and get T3 reinstated. If not it can be bought without prescription and members can help source it.
3) Seriously address the Hashi's by adopting all the suggestions given in the other thread.
4) Seriously supplement to get all vitamins and minerals up to optimal levels.
Fruits and Fibres cubes do but you have to start with half a cube and work up. Magnesium Citrate definitely does when you get up to the normal serving size. They don't work overnight, give a few days then things will start to normalise. If I was to recommend just one, it would be the magnesium citrate powder. I buy the Original, unflavoured, and make a small drink with orange juice and have it in the evening.
Your poor daughter! A useless endo and an unsympathetic partner ~ although it's difficult, I think, for people to understand how dreadfully ill hypothyroidism can make you feel. At least she has a caring mother to help ~ who has definitely come to the right place! There are thousands of people on here who understand perfectly what the problems are ~ it's a pity she can't join the forum herself but as long as she follows all the sage advice given on here things will get better for her. It isn't really helpful at all to belittle her symptoms ~ she must feel really ill and that will only cause more stress and then more illness. The constipation can get really bad ~ she probably really needs the magnesium etc. that others have advised ~ wonderful stuff! I don't know what 'fibre' she tried but anything too fibrous when you are really constipated and your system has really slowed down, can cause problems ~ it happened to me ~ I was hospitalised following doctors advice! The only thing I would recommend she could introduce to her diet (in addition to what the knowledgable folk have already posted) is Linusit Golden Linseed from health shop ~ tastes of nothing but goes slimy when ingested and aids the passage of food. Full of omega 3 as well, which will also help her. It seems a shame she has had her T3 stopped if she didn't have these problems when on it.
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