New to this and need help understanding thyroid... - Thyroid UK

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New to this and need help understanding thyroid bits and bobs

Littlemiss_shopper profile image

Hi everyone I was hoping someone could help me interpret some results.

Background: About 5 years ago I had a blood test for a pain in my stomach and the doctor mumbled something that 'my thyroid was on its way down...' nothing more was said and the pain resolved itself.

Then 3 years ago in the space of 9 months I gave birth to my 3rd daughter, moved house and lost my dear mum to leukaemia. I lost a good deal of weight and anxiety started creeping up. At the time I accounted for it as stress and breastfeeding weight loss. Then i had a stable period where I felt ok and my weight returned to its usual state.

Over the past 15 months I've had a strange mixture of symptoms which have caused me to visit the doctors.

The first was anxiety which I was prescribed sertraline 25mg (still taking and anxiety is managed) and I insisted on a thyroid test as my sister and my auntie are hypothyroid (taking 300mg and 150mg daily levo respectively).

Symptoms were weight gain (well over a stone despite exercise), excessive sweating (I never feel cold ever which historically is not like me), insomnia, bouts of nausea, tiredness, muscle pain. Tummy pain (swinging between constipation to too loose!)

So in June my first bloods were done.. result was 88.8 U/ml (<35 U/ml) thyroid antibodies Ab conc , no other results given and the doc prescribed me 25mg levothyroxine. After reading this forum I realised that I have hashimotos.

Repeat bloods July .(not fasted and had just taken levo as I didn't realise you weren't supposed to - I also now take my levo in the morning with just water not tea and milk like I did! Then leave a 30-45 min gap before drinking a decaf tea - is this ok?).

Result was TSH 5.48 mU/L (0.27-4.20) free T4 13.8 (11.0-25 pmol/L) result was to increase to 50mg levo.

More bloods end-Aug TSH 4.05 mU/L (0.27-4.20) Free T4 13.7 (11.0-25 pmol/L). Result to stay on 50mg Levothyroxine.

Job done according to my hubby but I spoke of this forum and I said I'm nowhere near the starting blocks with this one!

As my symptoms continued and I read more on this forum I took a private blood test for the thyroid ratio etc. I fasted with just water, blood taken 8.30am with my levo taken 26 hours earlier.

Results were as follows:

Oct -

TSH 3.97 (0.27-4.20 mIU/L)

Free thyroxine 14.2 (12-22 pool/L)

Total thyroxine (T4) 107.0 (59-154 nmol/L).

Free T3 4.03 (3.10-6.80 pmol/L)

Reverse T3 18 (10-24 ng/dL)

Reverse T3 ratio 14.58 (15.01-75)

Thyroglobulin antibody 319.00 (0.0-115 IU/ml.

Thyroid peroxidase antibodies 89.9 (0.00-34 IU/ml).

Vits

Active B12 148.2 (25.10-165 pmol/L)

Folate (serum) 5.28 (2.91-59.00 ug/L)

25 OH Vitamin D 52.7 (50-200 nmol/L).

CRP - high sensitivity 4.9 (0-5.0 mg/L)

Ferritin 12.7 (13-150.00 ug/L).

So took these back to my GP to see if I can get referred (my husband is on bupa + family with his work) who did listen although he only glanced at the private results and talked only about the TSH results. So he has upped me to 75mg levo with repeat blood tests in 4 weeks. If still 'high' he will refer me onto an endocrinologist. My next blood tests will include the thyroid tests TFTS, and a bone profile, HbA1c, IgA TTG, oestradiol and a few others than I can't make out.

Could someone please help me by explaining the ratio thing as well as the sorts of multi vits I should be taking (I currently don't take any supplements but obviously from the above results I need to start) not sure what Vit levels to take. I think perhaps a gluten free diet might need looking at too so would appreciate any thoughts on this. I've just turned 40 and feel like I'm falling apart!!!

Many thanks for reading this thyroid war and peace and for all those who contribute to this site, I've got books from the library on this subject but this forum is by far the more informative and easiest (and friendliest) to follow x

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Littlemiss_shopper
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10 Replies
greygoose profile image
greygoose

Ratios are for healthy people, not hypos. So, I wouldn't worry about them. And, rT3 really isn't relevant, either, at this point.

What you need to worry about are your low Frees. Your FT4 is well under mid-range, when most people need it up nearer the top of the range to feel well. So, you are under-medicated. That's what your TSH is saying, too. Once you are on thyroid hormone replacement, it should be one or under. You need an increase in dose.

As for multi-vitamins, all I can say is : don't. Don't even think about it. They are bad in so many ways. They are at best useless, at worst dangerous.

What you need is your vit D, vit B12, folate and ferritin tested. These are the basics, needed for your body to be able to use thyroid hormone - and they need to be optimal, not just in-range. Once you have the results, you can supplement what you need and as much as you need, of good quality nutrients. Rather than a bunch of random, poor-quality stuff in a multi-vit that you probably won't be able to absorb.

Littlemiss_shopper profile image
Littlemiss_shopper in reply to greygoose

Hi greygoose many thanks for your reply, so basically I should keep having bloods taken and upping my dose until the TSH is under 1? It's frustrating that dose increments are in 25mg of levo following blood tests of 6-8weeks apart x

greygoose profile image
greygoose in reply to Littlemiss_shopper

That's the way it has to be. You cannot rush hormones, or you will find yourself back at square one. 25 mcg increments at six week intervals, is the absolute maximum.

That is good to know thank you because I now won't rush the situation. I also wanted to ask a separate question about my sister if that's ok?. She is 42, 18 weeks pregnant from ivf (her last chance), no previous pregnancies, she has been hypo for 10 years at least and was recently on 225mg levo, her latest bloods (I don't know results and ranges etc) has made the doctor up her dose to 300mg levo. Should this cause concern re the pregnancy? She doesn't even know if she has hashimotos or not (unbelievably she is a nurse!). I've tried to say a few things to her about the whole thyroid issue but as you realise I'm massively new to this and have a limited knowledge. Thanks grey goose x

Limbolass profile image
Limbolass

As greygoose said, you should be more in range. Your TSH is still too high (should be 2 or below) & T4 too low (even though it's in range, it's right at the bottom end.) I have a similar issue, my last T4 was 14.8 & at my endo's range 14 is the minimum, she said it was too low but no matter what I do I can't seem to raise it. (I'm on a levo/NDT combo - 100/30 daily.)

As you say, it looks like you have Hashi's with your high anti-bodies. Gluten free diet may help, have you looked up Dr Izabella Wentz, Thyroid Sexy/Gena Lee Nolin, Mary Shomon online? They have Facebook pages, sites & books. Also Stop The Thyroid Madness site is useful.

Your ferritin & folate & vit D are too low, right at the bottom end, I had similar levels & was prescribed ferrous sulphate (iron). I was told it's probably as a result of my heavy frequent periods. How are your periods?

I try to eat healthy foods as well as take supplements but not multi-vitamins as they're not strong enough. If you buy vitamins, make sure they're high strength & read reviews of them first, "A" is good for that. But it's a case of trial & error, try them & see what your blood tests say. Vitamins did help to boost my iron, folate & B12 so once my ranges were better I reduced taking them to every other day, I also have a pill cutter (I cut 60mg NDT in half). Do you have a pill cutter? My endo prescribed me one to cut my liothyronine/T3 in half (but that didn't help much anyway, another story!)

But yes it's best to get your nutrients from lots of fruit & veg, nuts & seeds etc. Research online what's good for what, e.g. baby spinach is good for iron & you don't need to cook it. Cocoa/cacoa is good for energy & mood. A high protein diet helps with strength & keeping weight off, I couldn't lose weight until I started protein drinks, just one a day. Pilates is also good for strengthening muscles. Magnesium flakes/epsom salts in baths help alleviate muscle aches.

I'm assuming you know what NDT is? Natural dessicated thyroid, which works better than Levo for some, difficult to get prescribed but you can buy it online, I get mine from somewhere that begins with an "A".

Hope that helps, it's a learning process & we're all slightly different, what works for one person isn't necessarily going to work for another.

Littlemiss_shopper profile image
Littlemiss_shopper in reply to Limbolass

Hi limbolass, thank you for replying what you have suggested is massively helpful. I didn't know what NDT was. I don't have a pill cutter but at the moment I'm on 75mg levothyroxine with another blood test due next month. I did have a good look at vitamins today and from what you've said I definitely need to address mine. I did buy a vitamin D oral spray (which actually doesn't taste too bad!)

I might start the protein drinks, I do circuits twice a week (1x 45min and 1x90mins which near enough finishes me off!!!). You've been really helpful in your reply thanks so much and I'm going to look at those website you suggested xx

wakeham profile image
wakeham

Hi Littlemiss

Sorry that you are not well, I'm not an expert but I have had a lot of the same problems as yourself ! The antibodies problem over the years has now given me an autoimmune disease

RA!! and now the Endo has decided to dismiss me from their care! and let the rheumatologist look after me!! I'm on 75 mg of levothyroxine, it is important to me to take Vit D-- B12 -- and Vit C, all I can say is keep on top of your Iron levels which I was advised to do by friends on this site and don't give up hope of getting on top of this condition.

With Regards wakeham

Littlemiss_shopper profile image
Littlemiss_shopper in reply to wakeham

Hi wakeham thanks for replying, that is massively disheartening that they've been so dismissive of you. I agree this site has been more helpful that it will ever know!!! I'll take your advice re Vit levels, I've started Vit D and will get some good quality B12, vit c and iron. I do hope that the rheumatologist will give you some positive action xx

Maz1 profile image
Maz1

I agree with most of what has already been said except I do believe good quality vitamins and minerals help enormously. Do not buy them off the shelf. I get mine online. At least 300mg of "elemental" magnesium in chelated form taken in split dosage with food, Vit B complex in liquid form to aid absorbtion (especially good for anxiety), 5000iu of Vit D3 (many people are deficient through lack of sun exposure) and probably a chewable Vit C of say 500mg. I also take a good quality fish oil of pharmaceutical grade (toxic substances removed). I don't believe in multivitamins as they are almost all packed with a filler and do not get absorbed by the body. Other than that, you need to get your TSH below 1 and your Free T4 and T3 increased to a more acceptable level. Good luck!

Littlemiss_shopper profile image
Littlemiss_shopper in reply to Maz1

Hi Maz1, thanks very much for your reply the vitamin levels you've given me are very helpful, I've already started vit D but from what you say then it still won't be enough (3000iu) so I'll look at that one again. I didn't realise that off the shelf multi vits were so poor. I shall look online at the concentrations of what you have suggested. Do you have any good online suggestions (or is this not allowed?!?!) thanks again for your help xx

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