Hashimotos, recent blood test results, feeling awful :(

[Elsa1509]

Hi Everyone

I have posted on here several times and just wanted to share my recent Blue Horizon results. Very briefly, I have Hashimotos with very elevated antibodies (TPO and TgAb). Have a large benign nodule (irregular edges) and smaller nodules and two episodes of thyroiditis 20 years ago after my daughter was born (hyperactive symptoms confirmed by blood test results). I have never taken any thyroid medication. Results from yesterday are:-

TSH 1.69 (0.27 - 4.20)

FT4 14.79 (12 - 22)

FT3 4.10 (3.1 - 6.8)

I did the test because I have had the following symptoms:-

Puffy, swelling in face and hands

Puffy eyes

Very weak, painful muscles

Exceptionally dry skin on face and hands (peeling)

Can't lose weight despite healthy eating

Exceptionally dry eyes (optician confirmed last week I am at serious risk of eye damage)

Daily and frequent palpitations

Exhaustion and falling asleep every evening on the sofa

Pressure and strangulation feelings in throat

Swelling in thyroid gland (noticeable)

Poor memory and brain fog

Raynauds's syndrome (long standing)

My ferritin has risen from 7 to 14 (range 11 to 300)

B12 is ok at 385

Vit D was 78 last year so I think that's ok and endo said it was fine.

The only supplements I take are Spatone iron water (I cannot tolerate iron supplements) and Boost B12 spray from Holland & Barrett.

I didn't know whether to be relieved when I saw these results or in disbelief that they appear to be so 'normal'. Maybe I have a problem with my thyroid receptors!!

If anyone can comment on why I might still be feeling awful despite these results I would be very grateful. Thank you so much in advance!

[Ruthi]

Well, your free T3 may be in range but most of us feel well only when its in the top quarter of the range. If mine were that level I'd have all your symptoms plus some (minus the thyroid swelling, of course, mine is long dead)

Your ferritin may be better, but its still nowhere near good enough. It needs to be mid range at least. Eat lots of liver - at least once a week. Kidney is good too. If you can't stomach liver then its possible to buy it in dessicated form in capsules.

B12 may or may not be OK. In Japan they treat people as deficient if under 500. Has your folate been tested? Lots of leafy green vegetables needed.

At the end of all that active Hashimoto's can just be miserable. The general advice here is to go gluten free, which often helps to slow the disease and lower antibodies.

I couldn't lose weight despite optimal thyroid and nutrient levels. I finally started on a ketogenic diet about six weeks ago and it is working well. It has wonderful side effects of feeling great, no more heartburn or gastritis, no wind....

[Elsa1509 in reply to Ruthi]

Thank you so much Ruthie. I have been gluten free for several years now and have even stopped the very occasional gluten indulgence in the last few months . My folate on a recent blood test was fine and almost at the high end.

I forgot to say I did the blood test at 6.30 am fasting when the TSH is supposed to be at its highest!

I think it is just the slow miserable decline that Hashimotos brings where I am in the twilight zone with no chance of the GP medicating but not daring to go down the self medication route at the moment! The symptoms are so real but a medic is never going to believe they are related to the thyroid!

Thank you once again !

[Ruthi in reply to Elsa1509]

I didn't realise you are untreated. Others will confirm, but I am sure the standard treatment for Hashis is a low dose of thyroxine to dampen down the wildest excesses of the disease.

[Elsa1509 in reply to Ruthi]

Thanks Ruthi and I agree that this would surely help in the long run,but in this country they are just not that enlightened or advanced despite research showing the benefit of early treatment.

[Ruthi in reply to Elsa1509]

Where are you?

[Elsa1509 in reply to Ruthi]

In the U.K. (South Coast). I think the most advanced country for thyroid treatment from what I have read and researched is Germany!

[Ruthi in reply to Elsa1509]

I'm in Berkshire. Germany seems slightly ahead, but we get unhappy Germans on here too.

If you wanted to see a doctor privately who is relatively clued up on matters thyroid, then I know a man.

I don't think there is anyone on Amazon selling NDT at the moment, but again, I know a (different) man.

Just PM me.

[SeasideSusie Remembering]

Ruthi is correct. Dr Anthony Toft, leading endocrinologist and past president of the British Thyroid Association, says that starting Levo will 'nip things in the bud' regarding Hashimoto's. TSH should be kept very low or suppressed and supplementing with selenium L-selenomethionine 200mcg daily helps reduce antibody attacks.

I would add that B12 is not OK at 385. It's recommended to be at the very top of the range, even 900-1000. Also when taking a B12 supplement we need a B Complex to balance the B vits.

Ferritin needs to be at least 70 for thyroid hormone to work (our own or replacement) and for women I've read that 100-130 is best. Supplementing with iron and/or eating liver once a week are needed.

Vit D is recommended to be 100-150nmol/L. You should retest once or twice a year and keep within the recommended levels.

Your symptoms indicate hypothyroidism, your painful muscles are probably due to Vit D too low, fatigue will most likely be from your dreadfully low ferritin level.

Your endo is saying things are 'fine' because they are in range. He wont have any nutritional training so will know nothing about optimal levels of vitamins and minerals.

[Elsa1509 in reply to SeasideSusie]

Many thanks Seaside Susie and I completely agree that my ferritin and possibly B12 and Vit D could also be contributing to my symptoms. However these more recent symptoms of the puffiness and swelling led me to do a Blue Horizon test as I was convinced I'd gone downhill on the thyroid front but my test results never seem to reflect how I'm feeling (except once when my FT3 was below range). It may come to the stage when I decide to take the plunge and self medicate! Thank you for your reply

[Ruthi]

I also need to ask why you are afraid to self medicate? If you do as I do and self medicate with natural thyroid extract then your TSH might eventually be permanently suppressed, as mine is.

But it is possible to obtain levothyroxine which works for many. If it helps you can then go and confess to your GP and ask to be tested. If it doesn't you are no worse off, other than the relatively minor cost. It won't work terribly well while your nutrients are so bad, but once they are improved ????

[Elsa1509 in reply to Ruthi]

I am definitely feeling more inspired to self medicate although I've read that NDT doesn't always work for autoimmune thyroid disease. I've been close to ordering it off Amazon so many times so may take the plunge with something like Thiroid. Hopefully nothing to lose and everything to gain! Thank you for all your helpful advice and suggestions