Decided to start all over again with dosing because I can't win with the GP or endo.Taking 50mcg Levothyroxine for hypothyroid diagnosed 2013 but was feeling better on higher doses but I had gone over range a few times without feeling overmedicated. Endo wrote in a recent letter whilst my TSH is not perfect my thyroid hormones are both in range and any symptoms I am experiencing are not related to low thyroid.
I am not happy at all due to symptoms of going to the toilet more frequently (hard stool) heavy periods, tiredness, sweats, shaking, weak muscles, stretch marks on hips, hyperpigmentation on skin in creases, bone pain, headaches, weight gain, hair loss, puffy eyes and ankles.
TSH 3.87 (0.2 - 4.2)
FREE T4 13.3 (12 - 22)
FREE T3 3.2 (3.1 - 6.8)
TPO ANTIBODY 503.5 (<34)
TG ANTIBODY >1000 (<115)
Thankyou
Written by
Niki86
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Human beings do not live by TSH, but by the concentrations of FT4 and FT3 (Especially) in your body. By your figures, you are scraping the bottom of the barrel for both of these and your TSH is where only 3-5% of patients could expect to feel normal. You are seriously undermedicated, your TSH should be less than 1 (down to 0.05 would not be amiss) and your FT3 up around 5.5 or more. Your FT4 doesn't matter - if it is above range that's OK provided the FT3 is not over range as well. Good sign of under medication - eyebrow loss from the outside edges.
Thankyou I have lost the outer third of my eyebrows. I just can't win with the GP or endo. I had a letter from my endo saying even though my TSH is not perfect she would not increase my medication because the thyroid hormones were in range and any other symptoms are not low thyroid. I feel like I will never get well again.
Niki86 Both your GP and endo are like the majority who know very little about how to treat hypothyroidism and probably even less knowledge of autoimmune thyroid disease aka Hashimoto's which your high antibodies confirm.
TSH 3.87 (0.2 - 4.2)
FREE T4 13.3 (12 - 22)
FREE T3 3.2 (3.1 - 6.8)
TSH is very high in range, FT4 very low in range, FT3 barely scraped into range.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo only. You need to ask for an increase in dose, and here's some information and evidence to back this up
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.
This booklet was written for patients by Dr Anthony Toft, leading endocrinologist and past president of the British Thyroid Association and published by The British Medical Assocation. Available from pharmacies and Amazon for £4.95. You could buy this, highlight the relevant paragraph and show your GP/Endo.
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)."
If you would like a copy of the article, email louise.roberts@thyroiduk.org , print it and highlight question 6 to show your GP/Endo.
**
TPO ANTIBODY 503.5 (<34)
TG ANTIBODY >1000 (<115)
As mentioned, your high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it.
The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these hyper swings, then they panic and reduce or stop your thyroid meds.
The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again.
It's possible that you may have had hyper swings in the past which prompted reduction in your dose. Most doctors dose by TSH only and get panicky when TSH gets suppressed. TSH is a pituitary hormone, not a thyroid hormone. When taking thyroid replacement hormone, TSH tends to go very low or suppressed, this is because you are taking the Levo and your pituitary detects there is hormone so doesn't send your thyroid a signal to produce any - that signal being TSH. As long as FT3 is in range, you aren't overmedicated.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Some of your symptoms can be indicative of low nutrient levels, and Hash's can cause low levels. All vitamins and minerals need to be optimal for thyroid hormone to work. Have you had the following tested, if so please post results with ranges, if not it would be a good idea to ask for them to be done or test them privately:
Yes, you may have experienced a flare and it sent your results haywire, maybe indicating overmedication to your doctor. Do you have the results from when these dose changes were made? If so, post them along with the dose you were taking and what it was changed to.
If you post your vitamin and mineral levels, also what supplements/dose you are taking, we can see if you're anywhere near optimal, taking the correct dose, etc. and try to suggest something to improve them.
I was taking 200mcg levothyroxine and 20mcg T3. I take responsibility for the dose change. It was then changed to 150mcg levothyroxine and no T3 2 weeks later with no blood test results done. I then gave up after being told I was over medicated and went back to 50mcg so I am guessing I will feel unwell again and there was no need to reduce that much.
Niki86 Yes, that was a Hashi's flare or hyper swing. Reducing dose was the right thing to do, but recognising these swings and making sensible dose adjustments is the way to go. At the moment you need your Levo increasing, and at some point reintroduce the T3, but you'll need FT4 and FT3 tested to keep an eye on levels.
Going absolutely 100% strictly gluten free will help heal gut
But getting vitamins to good levels is essential too.
Vitamin D, are you taking pills, soft gels or mouth spray?
I personally like the "Better You" vitamin D mouth spray as it avoids gut problems. 2x 3000iu daily until level is around 100 nmol/L then may be 3000iu daily may be enough for maintaining at that level
Leaky gut and Hashimoto's go hand in hand. Low stomach acid is common
Lots of excellent info about gut issues and masses more info on these websites
You will need to increase Levo back up - may be in 25mcg steps, improve supplements but also look at gluten free too. Then you can add T3 back in as well
Avoiding all soya, including soya lecithin is good plan too (you can find soya free chocolate if you look hard enough!!)
Changing toothpaste to Floride free is another small step
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Happy with my GP
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Left GP surgery in tears
TSH and FT4
Newbie here - problems with endo
