Help!! Im struggling : Hi All, about 4 years I... - Thyroid UK

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Help!! Im struggling

diasy profile image
28 Replies

Hi All, about 4 years I started to get symptomatic for underachieve thyroid, I had the weight gain of 2 stone, and severe hair loss and the fatigue was awful so much so that I give up my high profile tech job, it was just so draining.

I got private blood tests done and I had high thyroid antibodies (antithyroidperoxidase was 95 kiu/l) my tSH was also 4.9. I was started on 25mg of thyroxine which did nothing for my symptoms. Two years on now and my hair is no better,(i spend a fortune on minoxidil) plus heavy periods with extreme flooding , awful PMS and another 1st weight gain, freezing all the time and now getting depressed, I also have mouth ulcers all the time and sleeping 2 hrs per day plus ten at night. The bloating and gas is awful I just don't want to go outside anymore or deal with people just so unmotivated.

I had my thyroids test done again last week and my TSH was 4.95 , but my free t4 was normal at 15.9 pmol/l . My doctor did a FBC and my neutrophils are also low and my globulin levels were slightly raised.....is this was Hashimotos does to your body? My doctor said I am subclinical thyroid disease, he never mentioned hashimotos and said I would not be symptomatic with a normal free t4. Please help I am not sure what to do, should I find another doctor or maybe its another disease that can cause raised TSH with thyroid antibodies?? I find it all so confusing and depressing. Any suggestions would be most welcome ...im 39.

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diasy
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28 Replies
Lora7again profile image
Lora7again

Are you still only on 25mcg? That is not even a starter dose if that is the case. Usually you are started on 50mcg and your blood is retested 6 weeks later and you continue to increase it by 25mcg until your TSH is 1 or lower and your T4 and T3 are in the upper third of the range.

diasy profile image
diasy in reply to Lora7again

Thanks for replying to me, yes i am still on 25mg, my doctor said that I am subclinical and should not even be on 25mg. It was a different doctor that put me on it a few years ago because i had raised antibodies. What concerns me is that the lab said my TSH was high even with taking 25mg, but my doctor is just ignoring this because my t4 is 15??? Its just woeful.

Lora7again profile image
Lora7again in reply to diasy

You need an increase straight away to 50mcg and then a retest after 6 weeks. Also I would ask for some vitamin tests they must include B12, Iron and Ferritin, Vitamin D and Folate. People with thyroid disease nearly always have low vitamins and you might have to supplement them. Once you have these results please post them on here for members to advise you. That 25mcg will not be doing anything for you in my honest opinion.

diasy profile image
diasy in reply to Lora7again

Thank you so much for your advice, I think I will go private again as the NHS doctor does not believe me, I am taking B12 and Vit D and he said I my full blood count said I was not anemic, but he didn't test my Iron or Ferritin, he just new by look at how many red blood cells I had. thanks again

Lora7again profile image
Lora7again in reply to diasy

Unfortunately your private Doctor might also be a NHS one and they are bound by NHS guidelines which means they won't treat you until you are really ill and your TSH is 10. This might take years or you might not even get to 10 because the TSH is pituitary gland hormone not a thyroid hormone. I would ask admin for a list of recommended Endocrinologists if I was you.

diasy profile image
diasy in reply to Lora7again

i just noticed that he did do my serum ferritin which was 56ug/L and my iron was 21umol, but i do take iron tablets for the heavy periods .

I forgot to say that my kidney function is also low at:

Mild–moderate decrease in eGFR between 59 mL/min/1.73m2 which I read online is stage 3 chronic kidney disease, but my doctor never mentioned this I just looked up my results when i asked the receptionist for them.

I know there is something not right, but not sure if its my thyroid doing all this!!

Its like a puzzle!

Lora7again profile image
Lora7again in reply to diasy

Your ferritin is too low imho

Marz profile image
Marz

Were there results for FT4 & FT3 in your private results ? Also what was the range for your recent FT4 result ? Lab ranges vary ...

diasy profile image
diasy in reply to Marz

In 2016 my ft3 was 5 and my ft4 was 16.

My range for ft4 from NHS lab was 12 - 22 and my result was 15.9pmol.

I also have high chlorestorol and I am vegetarian ! thanks for your reply

Marz profile image
Marz in reply to diasy

Cholesterol is not affected by diet - except possibly sugar consumption - but more to do with lowered metabolism. A dose increase of Levo is needed.

Suzi_ profile image
Suzi_ in reply to diasy

I have Hashimoto thyroid

I have been a no meat diet , ate fish and eggs for 10 years, had anemia and low vitamins D levels, getting massive dose of vitamins D now, taking iron 45mg and started to eat meat again for health reasons. I think eating liver and taking iron may raise your ferritin levels.

diasy profile image
diasy in reply to Suzi_

I just couldn't eat meat, I have been a vegetarian since i was 5 lol I can't stomach the taste or texture or the smell lol I do take a lot of supplements though and eggs

Marz profile image
Marz in reply to diasy

Do you supplement B12 ?- as you are vegetarian ...

diasy profile image
diasy in reply to Marz

yes i use jarrow 1000mg and ferrous sulphate 200mg, magnesium and d3

Marz profile image
Marz in reply to diasy

A good B Complex may help - to keep all the B"s in balance.

I have read there is a link between poor kidney function and low thyroid. I would complain that your GP missed this.

Taking VitC with iron helps absorption.

humanbean profile image
humanbean

I also have high chlorestorol

People with hypothyroidism often have high cholesterol. It is an effect of the disease. It suggests that your treatment is inadequate. If your treatment was optimal for you your cholesterol would reduce. Have you been put on statins? If so they really don't help anyone, apart from men who've already had a heart attack. But even for them there are better ways of dealing with their cholesterol. Personally, I wouldn't take statins if you paid me - and my cholesterol is high.

diasy profile image
diasy

No my doctor just told me to watch my weight and cut down on fat - i don't listen to him anyway, i am vegetarian and eat lots of nuts and olive oil so im not too worried about the chlorestorol just the thyroid ! thanks for your reply

greygoose profile image
greygoose

Daisy, what you need is a new doctor who actually knows something about thyroid. This one obviously doesn't.

Your FT4 may be 'in-range', but it is low in-range, and is only there at all because your TSH is high.

Thyroid Stimulating Hormone: produced by the pituitary to stimulate the thyroid to make more hormone. In a euthyroid (normal, healthy) person, it would be around 1. When you take thyroid hormone replacement (levo in your case) it should come down to 1 or under.

Your TSH has not come down, which means that your pituitary considers there's not enough thyroid hormone in your blood, so keeps the TSH above the level of a euthyroid person. That is wrong.

FT4 15.9 (12-22)

T4 is the thyroid storage hormone. In a euthyroid person, it would be around 50%. Yours is only 39% through the range. That is wrong, it needs to be higher. That is why your TSH is so high. Therefore, you need an increase in dose.

Your doctor is very wrong about not having symptoms if your FT4 is in-range. It's not the T4 that causes symptoms, it's the T3. T4 has to be converted into T3. If your FT4 is only 39% through the range, the odds are that your FT3 will only be about 20-25% through. In a euthyroid person, it would be about 50%. So, it is hardly surprising that you are having symptoms, is it.

So, you can see how little your doctor knows about thyroid. He is keeping you sick, and the results of that could be very serious. It will affect your heart, your liver, you brain and all your other organs. Not only should you find a new doctor, but you should write a formal complaint about this old one to his superiors.

diasy profile image
diasy in reply to greygoose

you are amazing im going to print his out, study it and actually take it to the doctors with me!! thank you so much you don't understand how grateful i am xx

greygoose profile image
greygoose in reply to diasy

You're very welcome. :) I hope it helps.

diasy profile image
diasy in reply to greygoose

It really does I always thought maybe I was not converting the t4, but its all very confusing you summarised it very well - you should do a blog of your own and some youtube videos :-)

greygoose profile image
greygoose in reply to diasy

Oh, no, I don't think so! lol That doesn't sound like me at all.

SlowDragon profile image
SlowDragonAdministrator

On levothyroxine the aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

As a vegetarian In recent years low B12 is highly likely

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Hashimoto's Frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone

Poor gut function 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 over 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 and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

diasy profile image
diasy in reply to SlowDragon

Ok im going to try to cut out gluten, i cut out sugar this month and i do feel less bloated. I think i will actually get blue horizon to run the tests again as my doctor said he won't retest until april. I used blue horizon the first time as it was them who discovered I had a high TSH and antibodies Im also going to test my b12 again just in case.

Thank you so much for all your advice it is so amazing that so many people are willing to help, i think this tells you a lot about how GP's just don't understand the Thyroid!!

Marz profile image
Marz in reply to diasy

If you are supplementing B12 then testing will throw up a skewed result ! It needs to be 500+ if you do test.

SlowDragon profile image
SlowDragonAdministrator in reply to diasy

As Marz says,

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Ft4 should be in top third of range

diasy profile image
diasy in reply to SlowDragon

This is so helpful! I have literally just ordered those igneous super B complex as they are on offer on amazon . Its funny you mentioned the folic acid because I just watched a video on youtube of a ballerina that had thyroid problems and she just recently said that its so important to get activated folic acid - specifically this one 5-MTHF, provided as Quatrefolic . Igennus have the quatrefolic as do jarrow but igneous so only 9.99 on amazon so ordering two boxes - thanks again you are all so helpful!

SlowDragon profile image
SlowDragonAdministrator in reply to diasy

Recommend starting slowly either half a tablet or single tablet per day

You may not ever need full dose of two tablets per day

MTHFR gene variation seems common with hashimoto’s

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