where do i go from here...................had m... - Thyroid UK

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where do i go from here...................had my follow up appointment to go through the blood test results, B12 - 382 (200-900) was told OK

mandys profile image
15 Replies

as was in the range

Free T3 4.2 (3.5-6.5)

Free T4 19.3 (9-24)

TSH - 0.27 (0.35-5.0)

was also told all in range so OK

Another GP that goes on ranges and not symptoms - will not up my dose of 100 levo as could make me hyper.... will not refer me either. How can I make myself feel better, feel so lost now want to self medicate myself

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mandys
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15 Replies
lucylocks profile image
lucylocks

Hi

My Vit B12 is 377and Doctor also said its O.K. becasue its in range but I was told on this site if you are hypothyroid your B12 needs to be in the upper part of the range around 700-800 so you could possible be suffering from some B12 defiency symptoms which are very similar to hypo symptoms, I have just ordered some B12 and also Vit D as mine is low at 22 Did you have your Vit D tested as again this can casue similiar symptoms

Hope this helps

Browny

mandys profile image
mandys in reply tolucylocks

Thanks Browny, no I didnt get Vit D tested this time, but will ask for it to be tested at next bloods in 3 months. Ive started taking multi vits but obviously not got enough to pump it up that bit more, will definitely be buying some B12 - I will soon be rattling as someone also suggested magnesium supplements too.

Moggie profile image
Moggie

Hi Mandy,

Yes your B12 could be higher but please get your VitD tested before supplementing as if you are not deficient and take it this can cause troubles. The more VitD in your body the more calcium your body will make and if your calcium levels are fine then the body will start depositing calcium in places that you don't want them to be deposited in like your kidneys, which could lead to kidney stones, this is why it is important to get the relevant test done first.

Please go back to your GP and ask him/her to test VitD, Iron, ferritin, Folates and antibodies (if these haven't already been done)

Both low VitD and B12 mimic thyroid symptoms and its a case of working out what is causing what through a process of elimination.

Low iron can cause extreme tiredness (I am being treated for this at the moment), that dragging tiredness that really makes you feel awful. After six weeks of medication I am starting to feel a lot better so please ask your GP to test this as well. make sure you get copies of all these results so that you can post them on here for advice. I am a great believer of only supplementing when I have been tested as throwing supplements down your throat "just in case" could cause you more harm so please get the tests done and supplement when and if needed. The multivitamins you are taking wont be doing much for you and the B12 you need are the Jarrow 1,000 - I have linked you the amazon page.

amazon.co.uk/Jarrow-Formula...

Also if you are going to take magnesium without being tested I would suggest Epsom salts in your bath as this is a very gentle way to increase your levels. I went for the one I have linked and it has increased my levels since I have been using it two or three times a week (plus it makes your skin nice and soft).

amazon.co.uk/Epsom-Salt-10-...

Hope this has been of use.

Moggie x

mandys profile image
mandys in reply toMoggie

Hi Moggie - thanks very much for the links.

My folate reading is 12.7 (4-26) and

my serum calcium reading is 2.23 (2.10-2.60)

corrected serum calcium 2.23 (2.10-2.60)

FBC total white cell 7.28 10*9/L (4-11)

Red blood cell count 4.57 10*12/L (3.5-5.5)

haemoglobin estimation14.4 g/dL (11.5-16.5)

MCV 98.1 (75-100)

Do any of these relate to iron at all? x

Moggie profile image
Moggie in reply tomandys

No - it would say Ferritin but they can tell if you have iron issues by your blood count (although my GP ignored this for months - even though I was pointing it out to her).

Are these the only tests you have had done? If so try and get the other I mentioned done.

Moggie x

TraceyLE profile image
TraceyLE

Hi Mandy

My B12 has been 212 for the last four years and I only found out because I asked for a copy of my results.

The doctor refused to treat me as I am in range (lowest range 200). My vit D was also low at 13 so am buying these in as well. I found out from info on this site that these tablets are good to take. I take 5000mcg a day but have no idea if this is too much or too little. They do 1000mcg ones as well. Here is the link.

bigvits.co.uk/product.asp?p...

I can say my joint aches have gone although muscle aches remain but I have only been on them about 6 weeks.

Good luck

x

mandys profile image
mandys in reply toTraceyLE

Thanks for the link Tracey - yes your reading is definitely lower than mine, I will get my vit d tested at next bloods, although it was a battle to get these ones done, they should be routine along with the thyroid but thats NHS for you!! Its good to know that your joint aches have gone as well, thanks for advice

mandy x

Moggie profile image
Moggie

Sorry meant to say that if any of the above are low in range (VitD, B12, iron etc.) then it will hinder the conversion of your T4 to T3 which, although it is in range, is on the low side at 4.2.

Moggie x

mandys profile image
mandys in reply toMoggie

yes thats what i thought as well as my print out from hospital said - Serum freeT3 4.2 (3.5-6.5) normal no action then said "ideally aim to normalise serum TSH in uncomplicated primary hypothyroidism" - do you know what that means?

but ive seen 2 gps about this now and they are both adamant and will not up my dose, try t3 or even try another medicine, i'm like banging my head against a wall now - they even pulled the "anti depressent" or "maybe early menopause" on me...... how do you get the right treatment? should I complain to surgery practice manager?

thanks Moggie x

Moggie profile image
Moggie in reply tomandys

They wouldn't let you try T3 because your TSH is already below their range, as I have already said low B12, low VitD or low iron could be causing your lingering symptoms so try and get your GP to test for these as your first priority.

Once these are tested and corrected (if they need it) and you still have symptoms then will be the time to look at other things but I wouldn't complain just yet.

A lot of my lingering symptoms were down to gut issues - yes I was absorbing my thyroid meds o.k. but it seems I am not absorbing vitamins and goodness from my food - like calcium and iron.

Its all very complicated and needs a lot of research, effort and thought when you have this illness but with all the above you should get there in the end.

Moggie x

Moggie profile image
Moggie

Hi Pettals,

Yes having a low folate level can cause tiredness. Have a look at this link for sign and symptoms and what to eat to increase them.

nlm.nih.gov/medlineplus/enc...

Hope it helps.

Moggie x

ejh1 profile image
ejh1

Hi Mandys

Gosh, your results look very similar to mine a short while ago. I was told the same - all is OK, except that I had terrible neuropathy. However, my endo is very happy for me to suppress my TSH, so was happy for me to take more. I went from 100mcg to 150mcg in the space of 6 months and can honestly say that I have never felt anything like hyper. I also started supplement with shed loads of most vitamins and minerals, including 2 x 1000 Jarrows B12 per day. My TSH has gone under, my T4 is about the same and my T3 hasn't changed much, but I feel better.

My endo went off on one about supplementing with T3 and said that some people actually have a low level naturally, especially in certain disease states, and suggested looking for other things (like coeliac disease) first.

My bloods are due in a month, and I will have the coeliac test then too (although I don't really want to find that out!!). I will find out if my B12 levels have rocketed then. I also found out it has been at just under 200 for over 6 years - possibly explains a lot of things. I have irreversible nerve damage now (minor stuff though). I'd certainly say to supplement sooner rather than later. I understand that you can't overdose on B12 also, and its not really very expensive.

mandys profile image
mandys in reply toejh1

hi ejh1 you're very lucky to have seen an endo with results similar to mine, i've tried and pushed but nothing :-( What is neuropathy? I agree if I up my dose a small amount, it isnt going to make me hyper but no they wont agree. Well I'm going to make a start on the B12 first and take it from there for sure. I was previously tested for coeliac in these last bloods but came back 0 so thats a relief I guess but I had been feeling bloated with bad wind (sorry!!) and diariah (sorry cant spell !!) so thought it was an ammune thing but thats all clear. I hear so many stories of most people being so well on T3 it makes me just want to go out on the black market and order some (but that is not always a good idea)

thanks for advice mandy x

ejh1 profile image
ejh1 in reply tomandys

Hi Mandy

Neuropathy is numbness and tingling. I was examined by allsorts of people, including a neurologist, who said it wasn't B12 but could be thyroid related. The endocrinologist says its not due to the thyroid. The GP has no clue. I have private healthcare, so can go privately, and I pay to see my private endo. Fortunately, I'm a medical scientist and able to have a stab at sorting myself out too. Buying T3 has certainly been a thought of mine too, but I'm not so ill as some people report on this forum (in fact, most people wouldn't know there was anything wrong with me unless I tried to run more than a couple of miles!), and do think its best for me to try everything else first. I have a friend who sees the same endo on T3/T4 and she is not well (although she does function and is able to work) - she takes bucketloads of both and it seems to have little effect - so I can see that it won't necessarily work perfectly in everyone.

The more I read and try things out, the more I think that nutritional deficiencies must play a large part, in me at any rate. That is easy to sort out, so it is worth giving it a try first in my opinion. I also feel that I could take more thyroxine without feeling hyper, and having been underdosed by my GP for many years has not helped.

I'm glad you are not coeliac! I dread that test... I also have diarrhoea and wind, and think it may be due to my endometriosis on my bowel. This may cause the nutritional problems too...

Cheers, and good luck with the B12!

Emma

Heloise profile image
Heloise

mandy, your FT3 number is still very low. It is the all important range and there is room to go up. Since you are not feeling optimal, press to have an increase. FT3 is the active form of thyroid and the one that raises metabolism, temperature, energy, etc. etc. etc.

I'll just add that your T4 is pretty high which may mean you are not converting from T4 to T3 as efficiently as you should. This may mean you have reverse T3 being made from some of that T4. That would be another problem.

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