Hi everyone, I hope that you are all well. I have an update on my journey and just wanted some advice as I am still very new to this. My journey started a few months ago. I've tried to condense everything below.
Just to state I have had various blood tests and they are all optimal (cholestral, Vitamin D, Iron, Vitamin B's, Ferretin, anemia and many more) I am vegetarian and always have been, but I approach every meal as a science experiment so haven't had any deficiencies. I am not lactose intollerent or celiac. That said, I haven't had selenium, or heavy metal tests as NHS won't do it, but may do that privately. The only supplements I take are Red Clover, vegan Omega, and I take Turmeric on a rotation every three months.
28th Jan went to docs with a numb finger. Various blood tests, here are the ones out of range. Taken 9.10am
TSH - 6.86 mU/L (range 0.3 - 4.2 milliunit/L)
Free T4 - 9.9 pmol/L (range 9 - 23 pmol/L)
Creatine 54 umol/L (range 55 - 110 umol/L)
Neutrophils 1.8 - (range 2 - 7.1 10*9/L)
Doctor said he would do repeat tests in 4months to see if the levels had changed, and if it's the same, might consider medicating. The TSH levels freaked me out and I immediately took seaweed supplements and 1-2 Brazil nuts a day. I then did a private blood test on the 20th March.
20h March -privae blood test
TSH -14.01 mIU/L - ABNORMAL
FT4 - 11.8. pmol/L - In Range
TPOAb - 365. kIU/L - out of range
T4 82. - nmol/L - Normal
FT3 - 4 pmol/L - OPTIMAL
TgAB - 58.1. kU/L - Normal
I assumed the seaweed supplements caused a massive spike so stopped immediately. Continued with 1-2 Brazil nuts a day. Nuts are something I hadn't eaten for years due to family allergies and I can't have nuts in the house.
29th March NHS blood test - taken 10.15am
TSH 5.03 (range 0.3 - 4.2 milliunit/L)
FT4 - 14.2 pmol/L
25h April - Private blood test taken 9.20am
TSH - 6.87
FT4 - 11.9 - normal
TPOAB - 272 - out of range
T4 - 75 - normal
FT3 - 4.01 - optimal
TGAB - 47 - normal
8h May -NHS taken 9.30am
TSH 6.20 mU/L
F T4 - 10.4 pmol/L
I am now waiting for a doctors appointment to discuss. Appointment scheduled for mid June. Its very hard to see a NHS doctor in the uk ATM.
I don't have any typical thyroid symptoms, unless I have always had a thyroid issue and dont know any different. I consider myself to be healthy except for this weird numb finger that has now extended to surrounding areas. I am not anti medicine I am just very nervous about taking something long term.
My questions are
1. my results seem to be all over the place, is this normal?
2. what should I ask he doctor for at our meeting. Any more tests?
3. should I ask to be referred to an encologist and have thyroid scanned?
4. does anyone else with thyroid issues experiences constant numbness anywhere, but no pins & needles or pain?
thank you so much for all your help
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SunshineHPower
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Iodine has a complicated relationship to thyroid, lots of info collected here : healthunlocked.com/thyroidu... iodine-a-collection-of-useful-information-because-the-search-facility-on-health-unlocked-is-totally-pants
yes when I saw how quickly my levels spiked, I stopped immediately and TSH levels dropped dramatically within a week. not sure how to move forward now, but looks like I have hashimotos
. Even though no other (obvious) symptoms , i'd say try the levo when offered ... to see if it stops the numbness. Hypothyroidism can be responsible for all sorts of weird / 'non typical' symptoms
You're not committed to carrying on with lifelong T4 replacement if it doesn't suit you , if you stop taking it your thyroid will go back to 'doing it's best'.
unfortunately trying levo is not a quick experiment , it takes many months to find the right dose for you ,and until your body is settled on the right dose there will be ups and downs in how you feel. Similarly , if you decide to stop it, you can expect it to take a few months for things to rebalance themselves out again .
So it's a tricky decision when you currently feel well .... there ARE increased risks of all sorts of things when TSH is just a little bit over range ( including cardiovascular issues / bone issues) These increased risks are there long before TSH gets up to 10 (which is when it should definitely be treated even if there are no symptoms).
Realistically , at some point in the future it's quite likely you'll need to treat it, since your immune system has clearly decided it's going to have a go at knobbling your thyroid , and your fT4 levels are pretty low already .
Whatever you decide , you do need to keep an eye on your thyroid blood levels ... it may be many years before your thyroid becomes damaged enough to give you clear hypothyroid symptoms ... or it may never get much worse than it is now ..... or it may worsen rapidly.
I heed your warnings regarding thyroid left untreated can cause other issues. I definitely dont want that to happen. It looks like I need to talk to GP soon. out of interest is it worth trying to investigate why Hahsimotos is happening and trying to treat underlying issue, or is that a needle in a haystack scenario.
Yes variaable result numbers are very common in undiagnosed hypo. The thyroid can only put out odd spurts of hormone as its production decreases.
You've already had antibody tests and they are raised, meaning you have autoimmune hypo aka Hashimoto's and may benefit from a strictly gluten free diet. Some Hashi people also need to remove dairy from their diet.
Exactly what were your vitamin results? Being within range isn't good enough. The B12 range is too low and its very possible to have significant symptoms if your level is low in range. Same goes for other vitamins.
Its not absolutely necessary to have a scan unless you have ambiguous results which you don't.
Numbness can often be due to low B12 which would be expected with a vegetarian diet as red meat is the largest source of both B12 & iron.
You've now had 2 results with TSH above range so your GP should begin treatment as per NICE guidelines. Symptoms may catch up with you in time as every cell in your body needs thyroid hormone to function. Long term its better to be treated than not.
thank you for your reply. Just to clarify that despite being vegetarian my results are very good and always have been. I really do approach each meal as a science experiment. My last B12 result is 549 ng/L (range 160 - 800 ng/L) vitamin D 87 nmol/L (range ). my whole life doctors assume I must be deficient in something and are always very surprised when results come back and I am always well within range. I've never been anaemic. I'll make a note of gluten free diet, but I dont have any side effects to gluten as far as I am aware and have been tested.
yes it does sound like hashimotos. I have always suffered from seasonal laryngitis - I am allergic to birch trees mid feb-end of may (roughly). So I wonder if that is linked to hashimotos in anyway. sometimes laryngitis can be severe sometimes very mild depending on the birch trees that season.
thank you, I dont want to make things worse so will try and get an earlier GP appointment
Thank you thats very helpful. I did have a complete vit B test last year , not sure if that was active B12 though, I didn't know there was a different type, I can dig out those results and see what they all say.
Folic acid - 13.9 ug/L
Ferretin 92ugl in April (and was 88ug In Jan)
I dont think I have any symptoms of low stomach acid.... but ....maybe.
May I make 2 comments? No appt til mid-June? Ridiculous! Last month I had a stinking cough; went to pharmacy+was told I needed antibiotics+needed GP appt. That was 4.15pm. At 5.15pm I was in GP surgery waiting to see Dr! 2n point is re allergies. I used to have terrible hay fever, so bad that no over the counter meds worked+at times I couldn't see as my eyes were so swollen+weeping. Since taking daily 3-4k IUs of D3/K2 that issue has subsided+No more pricking/weeping eyes. Plus, D3 now being researched for so many medical issues, as it's a hormone. Brilliant stuff for me.
yes, booking appointments with my GP is crazy. Since this time last year it has become incredibly hard to make an appointments, surgery is extremely busy. You can get same day emergency appointments if you call at 8am , but the receptionist triages you, and thyroid doesn't count....so she told me... I was told to call periodically for cancellations. I'm in London.
I'm pleased you got to see a GP quickly,
hay fever - gosh yours sounds very severe and I'm pleased Vitamin D and K works for you. . Mine hay fever laryngitis varies from year to year, depending on when birch trees have sap leaking. Luckily its a short window of 4-6weeks usually. But its just my throat that goes it. Vitamin K - I haven't looked into that one, thanks for the tip.
Whilst sefl-treating with iodine is a very bad idea, it's more likely to be the Hashi's causing the fluctuations than the iodine!
Iodine is just one of the ingredients of thyroid hormones. And as I always say, you can add as many eggs to the batter as you like, but if your oven is on the blink, you ain't going to get a cake!
And, iodine in excess is antithyroid, anyway, so will reduce the thyroid's output, not increase it.
Hashi's is an autoimmune disease where the immune system tries to destroy the thyroid, mistaking it for the enemy. During the immune system attacks, the dying cells in the thyroid release their stock of hormone into the blood, causing FT4/3 levels to rise sharply, and therefore the TSH drops. Once the excess hormone has been used up/excreted, the FT4/3 levels will drop to hypo levels and the TSH will rise. And iodine won't do a thing to help that - in fact, it's more likely to make things worse.
1. my results seem to be all over the place, is this normal?
With Hashi's, yes. (NB, not with hypo caused by anything else.)
2. what should I ask he doctor for at our meeting. Any more tests?
Pretty certain that you now know more about it than the doctors dose! They're not very clued up on thyroid.
You've had all the relevant thyroid tests, but you do need nutrients tested: vit D, vit B12, folate and ferritin. These need to be optimal for your body to be able to use thyroid hormones.
3. should I ask to be referred to an encologist and have thyroid scanned?
Do you mean oncologiest (cancer specialist) or endocrinologist?
No reason to suspect cancer at the present time. And as you already know you have Hashi's, from those tests, not much point in having a scan at this point.
4. does anyone else with thyroid issues experiences constant numbness anywhere, but no pins & needles or pain?
I did, before diagnosis and treatment: in the tips of my fingers on my left hand. It's gone now my treatment is optimal for me.
I am not anti medicine I am just very nervous about taking something long term.
I think you're looking at it from the wrong angle. What they would give you - levo - to begin with, is not a drug. It's the thyroid hormone T4. We use words like 'treatment' and 'medication', but they're not really the right words. We should be using 'therapy' and 'thyroid hormone replacement', instead.
Personally, I too would be against a life-time of anti-depressants or statins, but taking hormones doesn't bother me - if I need them! The therapy is just replacing what your body can no-longer make enough of to keep you well. And, as that is never likely to change, it is going to be for life, yes. But, it's better than the alternative!
Thank you so much for taking the time to reply. I love the way you describe everything so visually, with the symbolisms you use, it helps me enormously 😀
Iodine - yes that was a naive experiment and I've learnt my lesson. 😱. I won't do it again. But at least it clearly showed I have Hashimotos and iodine makes mine worse.
1. I am assuming I have hashimotos and not something else.
2.vitamin tests I do these annually, a nd for a very long time hey have been optimal. that said I have never tested for selenium or heavy metals - is that worth doing?
3.endocrinologist I meant - but I suppose I don't need to yet.
4. thank you for sharing that with me, he numbness is super weird and I hate it, and really dint want it to progress. good to hear yours went after taking Levi
Levo being a hormone no a drug=- thank you, that is a very good way of putting it. is it worth trying to investigate why Hahsimotos is happening and trying to treat underlying issue, like a dormant virus or heavy metals? or is that a needle in a haystack? I also don't have the funds to grow at lots of tests and I'm pretty sure my GP will laugh at me if I start suggesting anything out of the structured NHS norm.
thank you so much for all your very valuable advice
With that level of TPOab, you have Hashi's, yes. Whether or not you also have other things it's impossible to say at this point.
Worth testing for Selenium, yes. I don't know about heavy metals.
Seeing an endo is not always worth it. They know no more about thyroid than GPs, but have some very funny ideas and often make things worse!
Yes, I hated the numbness, too. Especially my left-hand finger-tips have always been far more sensitive than my right. I felt as if I'd lost one of my senses. Not good for touch-typing!
is it worth trying to investigate why Hahsimotos is happening and trying to treat underlying issue, like a dormant virus or heavy metals?
In my opinion, no. But I know that others disagree. It probably would be like trying to find a needle in a haystack, and probably wouldn't do you much good. Even if you managed to stop the Hashi's in its tracks, the damage to the thyroid has already been done, and thyroids don't regenerate. So, you would still need thyroid hormone replacement for life.
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