Further advice please

[Fox78]

Hello all

I wanted to write again as I'm still not feeling right and just wanted some advice from you please

I started on 50 levothyroxine back at the end of August after having symptoms for probably over a year heart racing hot flushes no periods or missing one month then really heavy next aches in legs lower back pains pins needles insomnia sore mouth scalloped tongue ... Etc my tsh was 46.7 and ft4 was 5.2

I felt more tired than ever on the 50 and was getting a mixture of upset tummy one day then constipation the next and although some of the symptoms like dizzy feelings subsided some got worse and some I then got which I never had before I was diagnosed!

I was then put onto 75 around six weeks later, which I've been on now for six weeks.. which I am still on at the moment my tsh was 7.9 and my ft4 was 14.2 so although low end that was actually in range according to the lab references

Since I started taking 75 which is the mercury brand I felt much better initially tiredness went and was sleeping better but these past three weeks I've been all over the place again.. my main worry is chest pains and chest tightness which panic me as I think I'm going to have a heart attack.. I also sometimes wake in the night in a panic choking fit, and lump in throat feels like I've been crying and there is lump stuck.. This isnt constant but does come and go (I cannot feel anything in my neck)

I do my own blood pressure and that's normal ish but some days my pulse rate is really elevated in the 90s and I can feel it racing too this was happening before I went on the meds but the chest pains and aches seem to be new I had an ecg done back in Aug as I had a panic attack and went to A&E and this was fine just very fast (this was before I was diagnosed) the only thing that seems to be better overall is the dizzy feeling I've now got additional symptoms of things like hoarse voice some days and feeling colder too... Can the time of year have an impact?

I've also suffered more from bloating too since I have been on the meds and I feel quite depressed I've gained weight again I had lost two half stone back in the new year before I knew I was even hypo

I just don't feel right and it annoys me that people do just think because you look OK your fine I think people think it can be controlled with tablets and if your on the tablet you should be ok!!

I had vitamin tests done back in Oct and they were all OK so was coeliac

I'm not sure about the antibody as it looks like this was missed off the last blood tests

I have booked to get bloods done in three weeks

Can anyone advise do you think I should push to see a specialist I feel that my GP isn't really bothered and they are just going to keep increasing or decreasing depending on results not symptoms?

[SlowDragon Administrator]

Being tested for coeliac doesn't rule out being gluten intolerant

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

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You should have new blood test 6 weeks after EVERY dose increase

So you are due one now

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges.

They often need to be well within range when on Levo

Eg

Vitamin D around 100nmol

B12 towards top of range

Folate at good level

Ferritin at least half way in range

Post results when you have them, members can advise

Low vitamin levels stop Thyroid hormone working

When on correct dose TSH should be around one and FT4 towards top of range and FT3 at least half way in range

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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)."

You can obtain a copy of the articles from Thyroid UK email [e-mail]. print it and highlight question 6 to show your doctor.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

[Fox78 in reply to SlowDragon]

That's great thank you yes I think I do need to look at my diet as I def have symptoms of a leaky gut

I will ask for them to test my vits again too