Still no treatment - fed up

[Justine_Case]

Hi

I have Hashimoto's but am not on any medication for it still, due to not having had 2 consecutive over 5 TSH readings, or one of 10 or over.

This is my latest (private) test. Taken at 08.00am Biotin stopped around a week before.

TSH 4.260 RANGE 0.35 - 5.5

FT4 12.60 RANGE 11.9 - 21.6

FT3 3.98 RANGE 2.8 - 6.5

ANTI-TPO 179 RANGE >34 HIGH

ANTI-THYROGLOBULIN (TG) 46.4 <115 OPTIMAL

I have been taking vitamins - B Complex, B12 (due to numerous symptoms, in particular tingling everywhere) Zinc, Magnesium, Vitamin D3/K2.

I had a blood test with the GP which ruled out Pernicious Anaemia.

Same with Celiac. However I am gluten/soy and dairy free.

The last vitamin test I took in February showed good B12 levels (and active) in spite of my tingling symptoms, so it may be something else, but I am still supplementing B12.

Iron panel was fine, but ferritin was low, so I upped my iron-rich foods, and resumed my one a day Ferrous Fumurate.

Vitamin D always seems to be 'fair' at best, so I supplement daily for that.

I will arrange another vitamin/iron panel test soon, as I am mindful of the importance of not taking too much iron.

I am struggling with feeling exhausted, plus the tingling, feeling faint, pulsatile tinnitus, puffy face and ankles, high cholesterol,

blood pressure all over the place and so on.

I am not overweight - yet! but am having trouble staying active due to the fatigue.

My GP is aware of these recent results.

At what point are they likely to help?

I have had several TSH over 4 and 1 over 5 so far amongst my results.

Does everyone have to wait until these 2 x 5 or 1 x 10 TSH?

[seveneleven]

Gosh, I feel your pain. I had two above-range TSH readings on private tests but just below range on two NHS tests, so GP just sort of shrugged and offered to test again in 6 months given positive antibodies. My understanding is that it can be hard to get consistent readings with unmedicated Hashimoto's because hormones are periodically being dumped in the blood due to attacks. I've ended up going private, but it's not ideal. If NHS GP is sticking to the NICE guidelines, it does seem that you won't get anywhere until you get the magic figures. Depends I guess on your situation and how long you feel you can wait it out.

[Justine_Case in reply to seveneleven]

Yes I think that is what is happening with my TSH levels.

When I get a what feels like a hyperthryroid episode, that reflects in my 'lower than it would have been TSH'.

So why would a private Doctor help, but the NHS ones wont?

[seveneleven in reply to Justine_Case]

They just have the freedom to be a bit more flexible and tend to be more willing to look at the full picture. If you see a private thyroid specialising doctor, they have a better understanding than most NHS GPs, who get very little if any training in dealing with hypothyroidism. So I was started on meds at the first appointment because the overall pattern of T4, T3, antibodies, and symptoms meant it was needed.

[Justine_Case in reply to seveneleven]

Good to know, thank you!

[HungryHungryHypo]

Not helpful but that’s exactly why I went private. I am lucky to come from abroad with more accessible healthcare though. I couldn’t afford private treatment here.

When I told my endo about the NHS rule, she was horrified to think they’d consider this acceptable for a 30 something woman with diagnosed hashi.