I would be really grateful if someone could give me some advice. I was diagnosed with severe thyroid failure in March. My TSH was 74. It's now suppressed at under 0.01 and I can't get it to budge up. I'm due a test in about 2-3 weeks. I don't see a doctor ever and I feel pretty rough - starving hungry and shaky a lot of the time, irritable, with heart palpitations and sometimes my breath is a bit laboured. I don't know what to do. My GP practice is normally responsive but they are really struggling in the pandemic and the service is not great at the moment.
Results are below. Thank you so much.
9 March 2021
TSH: 74 IU/L (0.27-4.20)
T4: 4.5 pmol/L (12.00-22)
Put onto 100mcg Levothyroxine
27 April 2021
TSH 0.04 MIU/ L (0.27 – 4.20)
Free T4 22.3 pmol/L (12.0-22.0)
Thyroid autoantibodies
(TS) – positive
Thyroid peroxidase 436 IU/ mL (0-34)
TPO interpretation - Postive
2 July 2021
TSH <0.01 MIU/ L (0.27-4.20)
Free T4 20.1 pmol/L (12.0-22.0)
September 2021
TSH < 0.01 ( 0.27-4.20 ) mU/L
Free T4 21.5 ( 12.0-22.0 ) pmol/L
Free T3 6.9 H ( 3.1- 6.8 ) pmol/L
Anti-TPO 1183 H ( 0-35 ) IU/mL
Anti-TG 242 H ( 0-60 ) IU/mL
Change to 88mcg levothyroxine (miss 1 100mcg pill per week) but after two weeks I felt very fatigued, so went back up to 100mcg.
October - don't have test results but Dr says TSH is still suppressed therefore under 0.01.
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Couldn’t see Vitamin D test result in previous post
Have you had vitamin D tested
What vitamin supplements are you currently taking?
Suggest you get folate, ferritin and B12 levels retested
Was thyroid test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription?
Hi SlowDragon thank you for responding, I really appreciate you taking the time.
I have had coeliac testing and I'm negative. My understanding is that gluten free is only necessary if coeliac. I think my B12 and Vitamin D were normal when last tested.
The last thyroid test was taken in that fashion, i.e on empty stomach and last dose 24 hours before.
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
As coeliac result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
Many people find Levothyroxine brands are not interchangeable.
Work out which brand suits you best and stick to that brand at each prescription
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Just wanted to add a quick note to say negative coeliac now doesn't necessarily mean it will remain so. I tested negative in 2007 when dx Hashi's, but well and truly positive last year.
I'd suggest that if you develop any gut problems........that you get tested again.😊
My TSH is also very low below the range. It really needs to sit within that range because the TSH signals the thyroid to make more hormone and instructs conversion at the cellular level but something like cellular stress is signalling back to the hypothalamus to say that there is too much thyroid hormone and we don’t need any more. This is a protective measure.
Explained in more detail here by Dr Eric Balcavage:
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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