Thyroid UK
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Overmedicated? Help with Hashimotos lab results

Hello everyone. I was diagnosed hypothyroid (Hashimotos) almost 2 years ago. When I first started on levothyroxine I felt fantastic - for a few weeks - then gradually returned to brain fog, tiredness, weight gain etc in various degrees. I am now on 100 mcg per day and according to my blood tests I am overmedicated. The trouble is I need this amount if I am going to be able to function at all. My GP allows me to take this but has said it is at the top end of what she can allow. If I start to feel anxious and tearful (this sometimes happens) I drop 25mcg for one day. Other times I start to feel like I'm dragging myself about, I feel cold all the time and can't think straight, so I might add 25mcg for one day. I have been thinking about checking free T3 levels for a while now and have just got results back from Blue Horizon. It looks like my free T3 is within normal range, but please can someone who knows more about this advise? Is there ANYTHING I can do to feel a bit more with it again? I used to be quite sharp mentally but now it's such an effort to focus and my memory is rubbish. Also I used to be reasonably fit but now I'm overweight and feel like I'm dragging myself about most of the time. I'm better in the mornings but often by 6pm I feel like a zombie. I also have rheumatoid arthritis (treated with humira) and I'm on a gluten free and nightshade free diet which helps very much with that. A while back I had a blood test for my adrenal function as my cortisol levels were low. But the follow up tests I had were within normal range. I've done a bit of reading around this and suspect my adrenal glands are probably struggling. Certainly stress makes me feel a lot worse. Anyway, here are my lab results:

hs-CRP 1.70

Ferritin 98.7

TSH 0.05

T4 total 116.0

Free T4 22.10

Free T3 4.73

Anti thyroidperoxidase abs 414.0

Anti Thyroglobulin abs 206

Vitamin B12 309

Serum folate 21.90

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Girtonian,

In future please include the lab ref ranges (the figures in brackets after the results) to help members interpret your results.

TSH is suppressed and FT4 mildly over range but FT3 is within range so you aren't overmedicated on 100mcg but I can see that your GP wouldn't be agreeable to increasing dose. FT3 is less than halfway through range so rather than increase Levothyroxine dose which would raise FT4 it would be better to add a little T3 (6.25mcg) to your current 100mcg. It's very difficult for new patients to get Liothyronine (T3) prescribed and would normally require a NHS endo recommendation before your GP will prescribe it so you will probably have to buy your own online and self medicate. If you want to do this write a new post and ask members to message you sources where to obtain T3.

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Vitamin B12 is low in range. If you have the symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice on how to approach your GP as they're the experts on B12 deficiency.

Folate is good.

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Thank you Clutter. Sorry I didn't include the ranges in my post. I'll add them below in case anyone else would like to reply. I would love to try T3 but it does sound like quite a big deal to get hold of it. Such a pity it is not generally available on the NHS. I will consider whether to proceed and then write a new post asking people to message me as you suggest. I am already 100% gluten free, I am very strict about it, and began this before my thyroid diagnosis. I currently eat gluten free oats most days though and I know some folk find them problematic. Maybe I should try giving up my beloved porridge. I currently take oral vitamin B complex supplements, but maybe this is not enough - I do have tinnitus (going back some years) and (since being hypothyroid) alarming memory lapses.

Here are those results again:

hs-CRP 1.70 (less than 5.0)

Ferritin 98.7 (13 - 150)

TSH 0.05 (0.27 - 4.20)

T4 total 116.0 (66 - 181)

Free T4 22.10 (12.0 - 22.0)

Free T3 4.73 (3.1 - 6.8)

Anti thyroidperoxidase abs 414.0 ( less than 34)

Anti Thyroglobulin abs 206 (less than 115)

Vitamin B12 309 (250 - 569)

Serum folate 21.90 (8.83 - 60.8)

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Hello again Clutter, everyone. Thanks for your response a few weeks ago. I thought I'd post an update. I went to see my GP and took my husband along for moral support. I explained the situation as best I could and told her I was still feeling only about 60-80% of what I consider to be normal for me. I gave her a copy of the private blood test results and said I understood that I might benefit from B12 injections to get my B12 higher in range and that I was thinking about trying supplementing my levothyroxin with T3 to improve my T3 levels. I said I understood it was hard to get on the NHS and I was prepared to buy it privately if necessary. My GP is very kind and does listen but, crucially, she doesn't understand about T4 converting to T3. Once again she stated that T3 converts to T4 and that T4 is the active substance. She even started drawing a diagram. I had to confront her and say 'No, that's not the case' and my husband chipped in at that point and supported me. She then stopped in her tracks and said she would like to refer me to an endocrinologist. This will be at Addenbrookes Hospital in Cambridge, unless I request to go elsewhere. I asked again about B12 and she said she did not feel comfortable prescribing that now but maybe as a back up plan once I've seen the endocrinologist. She also said they might check my adrenal function again (I had a low cortisol result about a year ago, but follow up tests were satisfactory. I certainly do feel worse when stressed).

Meanwhile, last weekend I had another look at the vitamin and mineral supplements suggested on the home page of ThyroidUK website and realised I wasn't taking enough of most of them. So I've stocked up on everything and am making sure I take enough each day. After 3 days I've noticed I have a little more colour in my cheeks - but that might be from walking my dogs in the snow! I feel relieved that I've spoken to my GP and thankful my husband came to support me. I think it would have turned out differently if he hadn't been there to support what I was saying. I'm thinking I'll see what the endocrinologist has to say and take it from there.

I won't give up on the T3 idea unless I start to feel better without it. Thank you for taking the time to read this. Do you have any thoughts or suggestions, especially for when I see the endocrinologist?

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Girtonian,

If your GP really thinks T3 converts to T4 I despair. Just as well she has referred you to endocrinology. Email dionne.fulcher@thyroiduk.org for a list of member recommended endos and you can write a post asking members to send you feedback via private messages about endos at Addenbrookes.

You can buy B12 without prescription, methylcobalamin sublingual lozenges, but if PAS forum recommended B12 injections you should go back to them for advice.

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Thank you Clutter. How does the PM thing work? Do I have to post my email address or is there a better way to do it?

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Girtonian,

To read a private message: support.healthunlocked.com/...

To send a private message: support.healthunlocked.com/...

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Difficult to see whether you are converting well without the ranges, where I get my tests done the top of FT3 range is 5.7 but my local hospital is 6.8 so you could be fine orcyou could be low, but your B12 would be better at 500+ and you need to get Vit D tested as well. These with folate and ferritin help the Thyroid to function so need to be optimal,look at SeasideSusie's posts for how best to improve them.

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Thanks silverfox7, I have added the ranges now ( in my reply to Clutter) I take vitamin D supplements and a Metabloics multivitamin supplement which includes folate 60mcg. Maybe I need to address the B12, although there’s lots (42mcg) in the multivitamin, I understand I might not be absorbing it.

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I was finally diagnosed with severe hypothyroidism whilst in my early twenty’s (almost 20yrs ago), just getting my idiot gp to test took over 18months, during that time I went from 6st to almost 17st in weight and barley remembered my own name, often were I was or how to get home. The idiot finally ordered blood tests after my ex came with me (maybe the debilitating brainfog left me unable to converse the problems I was having, even though my dad suffers hypo. and I pointed this out along with symptoms) and was I assume more coherent, after weighing me (something he did with a rather sarscastic smeerk on his face...until he saw my weight at which point he became rather flustered and stutterie) at which point he proclaimed “ you may be suffering from an underactive thyroid” (SHOCKER) as soon as bloods came back I was immediately put on 150mcg of thyroxine (the levothyroxine came in later) after years of feeling like crap no improvement my dad got broadband, and although it took forever as would constantly pass out I finally through a number of sites including ‘stop the thyroid madness’ discovered the best treatment NDT which until the 70s had been used successfully to treat hypo.t. With excellent results (the change in treatment to simple thyroxine which is T4 only came about around the time of the TSH test introduction, prior to this patients where treated based on symptoms with NDT which was gradually increased until one reached a euthyroid state which was noted when hypo. symptoms finally disappeared. A typical maintenance dose is usually around 6grains) the best Natural Dessicated Thyoid is made in Canada and is called ERFA, getting your go to prescribe this can be difficult and your unlikely to get the dose you need which means getting repeats early on a regular basis is a must. NDT is best when taken sublingually and you should start on a dose of 1/2grain gradually increasing by this amount every 4-6weeks until you findy your symptoms have all but relieved (although you’l never get your eyebrows back😞). To get erfa on script 1st find a chemist able to source it this can be difficult as most can’t, your best bet is an independent hopefully one that is both friendly and helpful, once you have found your pharmacy then you need to see the most accommodating go in the surgery (if there isn’t one change practices) take all information you’ve collected concerning NDT and hypothyroidism plus you should find explanations as to why the TSH test is defunct an unreliable, also NDT contains T1, T2,T3 and T4 in amounts similar to those found naturally from a healthy functioning thyroid also ensure your chosen doc. understands that thyroxine/T4 is not actually used by the body the most important of the Ts is T3/liothyronine as this what the body actually relies upon most T4 alone does very little and it is produced by the thyroid along with other hormones as T4 to T3 conversion is more efficient and quicker than T3 production, this means that a poorly functioning thyroid will not only struggle to produce T3 but also to convert your T4 replacement to the ever important T3. Your doc may not be particularly happy to provide you with erfa but you must remain persistent and if need be hounding an relentless in your pursuit, I understand how difficult this can be especially when you feel so awful and exhausted so it my be helpful to take along a good friend or relative who understands how you feel and how severe your symptoms are (most gps are unaware of how many symptoms an poorly functioning thyroid can cause and I personally found myself being told that aches and pains, exhaustion, and weight gain amongst others were “ just one of those things” so be sure to also print out the list of symptoms from thyroid uk website and take it with you) ideally someone who can fight your cause with you. Remember the dosage given by your doc will most likely be equated to the amount of thyroxine being given be sure to collect your entire prescription but only start on the 1/2grain and increase as mentioned earlier slowly but shorly, the reason for such a low and slow dose and rise is to prevent adrenal fatigue a very likely Occurrence if you have previously been poorly treated, leaving your adrenals to try and compensate by overworking in order to increase energy, if you start on too high a dose or increase to quickly you very well may start to feel better, however this feeling of wellness is unlikely to last as you would proberbly succum to adrenal fatigue which would set you back to square one and would see you struggling to get to a the previous state of feeling well as adrenal fatigue is unlikely to get a diagnosis or treatment from your gp and even when treated can take years to recover from. Assuming you been able to your erfa and are increasing at the correct dosage and timeing you will be able to find the correct dose for you as you should continue to increase at low slow place until you feel well, often one will reach the correct dose for them and increase again at the right time usually you will feel some mild hyperthyroidism symptoms which will ensure you know to drop down to the previous dose as this is clearly adequate for you. Everyone has to make there own decisions about there treatment but I personally have no interest in bloods as far as my thyroid is concerned I go purely on symptoms or there lack of, blood tests done by numerous drs usually show me to be “over treated” (😔) and find myself in a position of an attempt to pursuad me to lower my dose, with this l choose to stay stern an refuse to have prescription dose changed this can be annoying as most drs are always likley to choose bloods over symptoms so for this reason I sometimes find myself in a battle of wills, personally I choose to never back down and will always argue my corner pointing out how when I did on one occasion reduce my dose slightly my symptoms began to creep in, this was something I knew would happen but chose to go along with to make a point to one particularly annoying dr. since then never again and I will use the info. I have learn’t to stop m gps or endo in there tracks (I choose to have a no back down policy, it took years of suffering and research plus many a battle of wills to get were I am...no thanks to any drs, and refuse to be dictated to over my health again. Drs need to realise that they are not gods, and sometimes need putting in there place, I suffer from numerous health problems as well as my now non-functioning thyroid which has been completely decimated due to hashimotos and poor treatment, I do however know my own body and I can tell when something is or is not right. Knowledge is power and I am confident in my myself to argue and fight as I need to, to stay on my correct dosage of erfa however many times or drs try to convince my otherwise).

Good luck in getting your health back and I hope you can succeed in getting there...to all suffering this difficult disease.😉👍.

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Thank you for sharing your experience Honeybear1. Sounds like your determination has paid off. Well done, I’ll bear all this in mind.

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