Thyroid UK
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So confused

As some of you may know, I posted my lab results on here some time back, as I didn’t really understand what they all meant. I was told on here that my raised TgAb was Hashimoto, and there had possibly been some infiltrations. It took a while for me to see an endocrinologist as my GP kept stating that my thyroglobulin was high, not the antibodies. Finally saw an nhs endo the other day but he was more interested in a cfs / fibro diagnosis, as he said you don’t get symptoms of hypo, until the tsh is raised, which mine isn’t. He said my ft4 was lower at 8, which again people here are saying is Hashimotos. The rest of the lab results for last weeks bloods aren’t back. Anyway, I contacted a private endo in the hope he may know more about Hashimotos and he was worse :( He said that again, you don’t get symptoms before the tsh is raised, and also said if my tpo isn’t raised as well, then I don’t have Hashimotos :( He also said raised Tpo and tgab can occur in people with no autoimmune disease. I don’t know what to think anymore. I don’t understand why there are ranges if they mean nothing :( I’ve had hypo symptoms for such a long time, and every time I get told more or less like it’s in my head. Even my bad hair loss. :( I was so relieved when I first found out that my tgab was raised because I thought I finally had an answer, but the attitutude towards my symptoms remains the same :( Why are there ranges when nobody takes any notice of them? What’s the point :,(

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I was diagnosed 12 years ago by my Gp with hypothyroidism...never saw my results just know they would have been from TSH ( I'm diabetic and TSH is a part of the yearly blood tests I get for monitoring), I was put on levothyroxin, but was not improving and had a private blood test done. This had two thyroid autoimmune antibody tests: perioxide and thyroglobulin. the TPO was negative but the TgAb was very elevated, and I was told I had Hashimoto's. I am not aware that thyroglobulin is anything other than a thyroid antibody, though it tends to be rarely tested, and my endocrinologist 12 years ago totally ignored these results when writing to my Gp. Years down the line, with what I now know was undertreated hypothyroidism, and lots of pain, weakness, exhaustion etc etc I was diagnosed with fibromyalgia by a rheumatologist, not an endocrinologist. Lots of other possible causes of my symptoms were ruled out by blood tests and lots of various scans- fibromyalgia is really a diagnosis of exclusion in the NHS. Sorry but I haven't looked at your previous blood test post, what was your TSH? The TSH ranges are based on many healthy individuals, and the results plot onto a bell curve where a very few have natural TSH levels at 6, a very few at well under 0.5, and the majority at 1.25-1.5 sort of range. So you could be someone who earlier in life naturally had a under 1 TSH , and feel awful at say 3, even if within the normal range. Unfortunately the TSH number dominates diagnosis now! I'd go down the DIY route( which s what I do now): test VitD, B12, folate and ferritin and make sure levels are optimum for good thyroid health/ T4 conversion ( look up SeasideSusie's numerous posts for levels, method of self dosing, maintaining). Add selenium( 200 mcg), magnesium, zinc, K2( Mark 7)... think about going gluten free(Hashimoto's is characterised by poor gut absorption). Could your Gp be persuaded to give you a trial of levothyroxin, 50 mcg, for 6-8 weeks to see if you improve, or thyroid blood tests make a move( though you might need private tests to get the active FT3 checked)? Hope you get somewhere good soon, I found being proactive a boost to my wellbeing.

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TgAb are antibodies to thyroglobulin

Thyroglobulin itself is not an antibody.

en.wikipedia.org/wiki/Thyro...

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Yes I know, that was the mistake my gp made. It was my tgab thatwas high not my thyroglobulin, but she kept telling the endo it was my thyroglobulin that was high. That’s why I had to wait so long to see one, for what it was worth x

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Well, that should have got you a faster appointment as raised thyroglobulin (not the antibodies) can be indicative of thyroid cancer. Sometimes wonder how any of these doctors passed an exam if they can't even read a blood test.

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They just kept saying they don't test for thyroglobulin, unless you have cancer, so said unless I have cancer, they don't need to see me, so good job I don't, I hope xx

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Iodine deficiency increases thyroglobulin. I have had thyroglobulin 110-150 when ideal is 3-10, normal upto 40. Thyroglobulin decreased on iodine.

So it can have other meaning than just cancer marker.

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Thanks for that, the way it was reported 12 years ago on my private tests, it was ambiguous and not obviously different from thyroglobulin. Perhaps the Gp ordered one thing and got the other, but didn't realise.

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Yes I didn't know about it either, until I was told on here. The GP unfortunately is very swayed by what the endo says, so won't treat until my tsh reaches 10, if it ever gets that high. Thank you for your reply, and I hope you soon get some relief xxx

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Had all vitamins and minerals checked and told all is fine but wasn’t told the figures. Tsh 2 years ago was 0.8 , now it is 1.6 but was 2, 9 months ago. Had bloods done in the afternoon this time after lunch which I saw in here could make my tsh lower but didn’t know to fast until after bloods were done x

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Don't need to fast, just get TSH bloods early in day as naturally it's at its highest overnight. Take thyroid meds after.

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Thank you xxx

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Eating lowers TSH.

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I had eaten breakfast and lunch before the latest blood tests were carried out. I didn't know about it having to be morning until after I'd had the bloods done. Oh well, I know in future xxx

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Yes, we live and learn. :)

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We certainly do :) xx

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I have read analysis of the research on the early morning blood tests for TSH etc and it criticised that the scientists had mistakenly compared early TSH blood draws, from those who had not eaten breakfast, with those of an hour or two later, who had had breakfast. The critics said it was the Time difference in the blood draws that reduced average TSHs and not that they had had food. I don't eat/ drink before blood draw, but more to allow thyroid meds dose soon after.

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Yes, I read that, too. But, doesn't mean to say that the eating didn't make any difference at all. Best to be on the safe-side, I always think, and not eat.

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They won’t give levo until tsh reaches 10 x

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I had the same problem.

I was told my thyroid was "borderline underactive" in the early 90s. I was still untreated in the first half of 2013.

I don't think my body is capable of producing a TSH of 10. But my Free T4 and Free T3 were rock bottom when my TSH was under 6.

In the end I resorted to self-treating.

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Yes, I think I may have to do the same eventually. It's just so hard to get treatment without a prescription in the uk though xx

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Hi Sadienerin; Have you ever thought of using Essential oils to help improve your thyroid? I use a few different ones and they do make me, over all, feel better. Maybe something to look into.

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Which essential oils do you use, and in what way do you use them?

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I was just about to ask the same xxx

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Hi Londinium;

I deal with <an oil vendor>. Each company has different names for similar products. With oils I believe you have to find a company/brand you trust and go from there. There is lots of info on the net about oils and there uses. The internet is a place to look for guidance and recipes. I use Lemongrass Peppermint, Endoflex and Myrtle. I am Hypo. There are others that are recommended. Like Myrrh. spearmint, clove, ledum for Hypo/Hashi. Graves has a different list. Some are similar oils. The oils should be diluted with a base oil 50/50. apply 3-5 drops over the thyroid (lower front part of neck) 1-3 times daily. Make sure to test the oil first, say use just one drop at first. Some oils are hot & some people have more sensitive skin, so oils my need to be mixed with more base. Apply 1-3 drops on Vita flex points, put in 00 capsules & take twice a day. I am not a doctor. This is what I have deduced from trial & error. I know how crappy I use to feel when I was in-between. You know what I mean. In-between being treatable, but yuckie enough to not feel healthy and stuck not getting better. I signed up as <<an oil> distributor, so I could get oils at distributor price. My oil collection keeps growing, much to my husbands dismay. Good thing he likes working with his hands. He has made me some nice oil shelves. : ) I hope this helps.

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1/2 bottle of base oil mixed with 1/2 bottle of essential oil? I thought much less essential oil is mixed with the base oil?

What is "00 capsule"? 🤔

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00 is the size of capsule. you can purchase through YL or go to health a food store. Most oils are mixed to a 1 to 1 ratio, depending on application. Peppermint oil is generally mixed 1 D EO to 4 D's base. (Hotter oil) Those ratios I gave you came out of the YL Essential oils desk reference book. Thats my go to for oil information.

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does that answer you questions

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Yes, thank you 😊 xx

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I hope it helps. Oils seem like they cost lots, but if you calculate how many uses you get per bottle. It puts it into a new perspective.

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I've used various oils over the years but I had wondered which oils you specifically meant re thyroid. Thanks.

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It's illegal to provide you with prescription-only meds in the UK without a prescription. But it is perfectly legal to buy meds from abroad for your own use, and import them, either in person or over the web. Controlled drugs are not included in this e.g. you can't buy Tramadol and import it. But thyroid meds of all kinds are not a problem.

The only thing you need to be aware of is that not all suppliers are legit. So don't just pick a supplier at random, write a post on here asking for honest sources to buy either Levo or T3 or NDT, whichever you are after.

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Ok brilliant, thank you 😊 xx

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I was given Levo by an Endo when I was just below 6 on the TSH range. I made a full list of all my signs and symptoms throughout my life that I could remember and she read through it. She started me on Levo that day, that was 2012. I’m still as tired now as I was then but some symptoms have improved. Don’t give up try and get another Endo appointment for a second opinion, just don’t get one in the same hospital trust and look up who specialises in thyroid, most specialise in diabetes.

Re blood tests make sure they are taken as early as possible during the day as TSH drops as the day goes on.

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I wish I could find one like that. I'm still searching. I know I won't start treatment yet, but hoping I might find someone will a nearer goal post for treatment xxx

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I saw a GP privately recently. I went to her for her HRT expertise, but also because I knew she was thyroidless and on T3. She looked at my TSH of 10.3 and said she would be unable to function at that level. Unable to work as a GP. Yet the NHS considers 10 a start point for Levo!

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Yes it does seem odd to usually have a range where the higher end of tsh stops at 4, but not treat until 10 xx

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Have you ever had tests done of any minerals and vitamins? Things like vitamin D, iron, ferritin, vitamin B12, folate, zinc, copper...

You can get lots of symptoms that are similar to hypo symptoms as a result of low nutrient levels.

In fact, low nutrient levels are very common in people who are becoming hypothyroid or who are hypothyroid. It is related to having too little stomach acid, which is a very common hypo symptom.

Unfortunately, having too little stomach acid gives symptoms like indigestion and heartburn, which doctors and patients take to be a sign of having too much stomach acid, and so stomach acid gets neutralised or suppressed, making the problem worse.

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I have had nutrient tests, although they won't tell me exactly what other than b12 and vitamin D, which they said are fine, but only told me the vitamin D level which is 55. I've asked for the exact results and they just keep saying they're all normal, so it doesn't matter :( It matters to me xx

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Woah there! They won't tell you what the exact numbers are? They're breaking the law! You have a legal right to a print-out of your results - all your results - under the 1998 Data Protection Act. And, if they refuse you your results and ranges, there are measures you can take to force them to do so. Don't put up with that! They are your results. Normal is meaningless. And 55 for vit D is not 'fine'. It is too low. These people are covering their backsides and their ignorance. If you don't know the results, you can't argue. So, they obviously have some thing to hide! Don't let them get away with it. :)

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That's what I was worried about. It all seems so secretive and I don't know why. Oh ok, he said regarding the vitamin D that it was fine at the moment, but might need supplements in the winter :/ xx

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Up until last month you were entitled to all your results under the Data Protection Act 1998. You could be charged for the information, but not denied it under most circumstances.

Last month a new act came into force (GDPR - General Data Protection Regulation), courtesy of the EU, and now you have even greater rights to your data - and they can't even charge you for it!

So, go back to your surgery and say you want copies of all your blood test results - the numbers and the reference ranges - going back to a date of your choice. If they come out with "They're all normal", say that you are entitled to have copies under General Data Protection Regulation, and if you don't get the information you will complain to

a) First port of call would be a letter to the Practice Manager

b) Second port of call would be the Information Commissioner's Office (ICO)

ico.org.uk/

ico.org.uk/your-data-matter...

eugdpr.org/

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Thank you so much 😊 xx

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I think you need them now.

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Hi,

Yes the most common raised antibody for Hashimotos is TPOAb but TGAb is a useful for confirming Hashimotos if there are symptoms of Hashimotos but no no raisedTPOAb.

Some people with Hashimoto’s test negative to allantibodiy tests too because their overall immune health is weak so they do not produce enough antibodies. If your immune systems has been stressed for a long time your total white blood cells and B-cells can be too low to be able to make antibodies.

Read Dr Khazzarian books, they are brilliant.

Sadly most Drs and endos here don’t seem to have a clue.

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I will read that, thank you xxx

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Please start again you sound so confused. You have already seen a private Endo who you state was useless, most are.

Why not do as I did take a Blue Horizon Thyroid No 11 blood test and post all the results with the ranges on this site for answers. Take the test early morning on an empty stomach. If you are taking medication i.e. Levo leave this off for 24 hours prior to the test.

I did exactly this after I had my thyroid removed the people on this site gave me good advice which I took an I am now well again.

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I have done a full thyroid panel, and have explained in better detail below xx

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You have a lot to deal with at present. it's simple please take the test and post all the results and ranges on here. I couldn't afford the test so I sold odd things to make up the cost and now only get test once a year now.

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I have, and have explained below xx

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Raised TG antibodies does not exclusively mean Hashimoto's. It can be a number of conditions.....or nothing obvious

healthline.com/health/antit...

Definitely get vitamin D, folate, ferritin and B12 tested

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...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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I've done a full thyroid panel by genova, which is what showed raised tgab. I will look to see where I can get my b12, folate and ferritin checked privately, as for some reason they' being secretive about what they've tested and just treat me like I'm being a nuisance for asking. They just keep avoiding giving answers. At least if it's checked privately, I can see the results myself xxx

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So it could be that it may not be Hashimoto's then? xx

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Can be nothing, as some people have raise TG antibodies for no obvious reason

Assuming you are in the UK, Vitamin D of 55 is too low. Minimum recommended is 75nmol and ideally higher at around 100nmol

Read lots posts on here about vitamin D. Mouth spray is good, retest in 2-3 months via vitamindtest.org.uk - £29 postal kit and retesting twice yearly.

Need to know folate, ferritin and B12 levels too

You need to get hold of copies of your blood test results and ranges. You are legally entitled to printed copies, they can NOT refuse

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, nor can they refuse (EU rules changed to say can't charge after May 25th 2018)

See Practice Manager if they remain difficult

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Ok, thank you 😊 xx

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Another doc playing the Fibro/CFS card and suggesting it's all in your head and moving towards the anti depressant "solution".

I speak as an old cynic who was diagnosed about 30 years ago as hypo.....I took that diagnosis and the medication on trust but I never felt well. I was then diagnosed as having Fibro and several years later also with CFS. I refused anti depressants! Nothing improved.....I just slowly began to feel worse until I was barely able to function. It turns out that I had been under medicated for years and the Fibro symptoms were actually hypo symptoms unrecognised by my GP.

For years I had been saying, "I'm sure my metabolism is faulty"....bit, hey, what would I know! The truth only began to emerge as I started to search my symptoms on line and learned about T3....all a mystery at that stage.

Next, I found this forum and started asking some very ill informed questions....slowly my knowledge improved and with that my confidence that there was light at the end of that dark tunnel. The advice I have been given has, I can honestly say, changed my life.

As briefly as possible...I went on to discover that I do not adequately convert T4 to T3 and there lay the cause of my years of gradually declining ill health. I carefully followed/still follow the amazing advice offered here, discovered a quick fix was out of the question and patience and determination are vital.

Using the advice and knowledge that gradually built up I started to self medicate and 6/8 months on I'm now slowly improving.

My point being, take control of your health care....now!

Had I known 30, even 40 years ago what I know now I would in all probability have experienced a much better quality of life before reaching my early 70s. However, hindsight, as they say, is a great thing!

Here you are in safe hands.

I'm not going to advise you ( there are members better able than I to do this) beyond suggesting you start a new post with up to date (private) blood tests which must include TSH, T4 ...and importantly T3 which you are unlikely to be given on the NHS. From that basic starting point your journey to recovery can begin because the treatment you are currently being given is confusing and unhelpful and only likely to cause you concern rather than improvement.

The sad fact is that medics know very little about the thyroid...if they did this forum would not exist.

Apologies for the long rant.....just hope it helps

Best...

DD

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Thank you. Trouble is, where to get medication. I can't find anywhere in the UK where you can get treatment without a prescription. Maybe I'm not looking in the right places xx

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I have also given my private test results below xx

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Sorry everybody, I should have been more clear. Originally I had been back and fourth to the GP with hypo symptoms for years. My tsh and ft4 were tested but kept coming up as in range, although at the time I was not told what those figures were, apart from one time 2 years ago when my tsh was 0.8. Still convinced it must be hypo as I ticked all the boxes, I searched on the internet in hope of finding an answer. This was when I discovered about antibodies and Hashimotos. Again Hashimotos ticked all the boxes. So then 8-9 months ago I had a full thyroid screen done via a Genova home kit through thyroid UK. This was done early in the morning. The results were all within range except for my tgab which was raised at 72 (range <40). Tsh 2 (0.40-4), t4 111 (58-161), ft4 15.5 ( 11.5 -22.7), ft3 6.2 (2.8- 6.5), ft4-ft3 ratio 2.5, rt3 0.33 ( 0.14-0.54) , tpo <14. I put these results on here and was told by many that this indicated Hashimotos and it looked from my results that I had had some infiltration. However my nhs endo thought otherwise. He has run further testing, which was done last week, the vitamins etc are back and within range. The tsh is 1.6 this time , and the ft4 is 8, the range as above, which means the ft4 this time is below range. I did however have these latest tests done in the afternoon after lunch as I wasn’t told it’s best done in the morning. He has also run tests for lupus, ra, diabetes, and vasculitis. The tgab and the other things he tested for this time are not yet back. He said it could be Hashimotos or graves, but thought unlikely, and instead thought it could be fibromyalgia and or cfs. The thing is, everyone on here, had told me it was definitely Hashimotos but the endocrinologist I saw on the nhs and the one I talked to privately say it’s unlikely. I see here that the administrator has also said it’s not necessarily Hashimotos. So I’m confused because I’m getting conflicting answers x

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With a TSH of 1.6 and Free T4 of 8 (11.5 - 22.7) then you need to be tested for secondary (or central) hypothyroidism.

TSH is produced by the pituitary gland in the brain. If something damages the pituitary then it may be unable to produce sufficient TSH for your needs. With TSH being too low your thyroid will under-perform, even if it is actually healthy.

There are several causes of secondary hypothyroidism - car accidents, getting whiplash, severe bleeding during childbirth (Sheehan's Syndrome), tumours, disease. For more info on causes, see this link :

en.wikipedia.org/wiki/Hypot...

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I had read that, and did say to the endocrinologists, private and nhs, but they didn't seem to like that :/ I need to find someone more interested I think. Where, I don't know, but am searching xxx

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Stop listening to all the conflicting suggestions from medics et al...listen to advice on here! Go back to the beginning as I suggested earlier and eliminate any confusion!

Right now you are putting the cart before the horse!

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In what way am I putting the cart before the horse? I'm just asking for advice :/ The administrator on here has also said that a raised tgab is not definitive of Hashimoto's. I have had the tests you suggested done privately too, and have listed the results, so I don't really understand your comment

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You must get vitamin levels optimal FIRST

If these are too low, they can confuse thyroid tests

Get copies of recent vitamin tests from GP. Do not let them refuse. They are legally your results

Or if necessary get retested Via Medichecks or Blue Horizon

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Oh I see, thank you x

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Sorry you are having such a difficult time....and asking for advice from members, as you are doing, is the way forward.

By "cart before horse" I mean that you seem to be drawing conclusions without having all the necessary info/ results to hand....the process needs to be well informed.

As others have advised, ask your surgery for copies of ALL your blood tests....you need to have vitamins and minerals at optimum levels to support thyroid function. SlowDragon has given you good advice re this.

You say, "The thing is, everyone on here, had told me it was definitely Hashimotos" then you say, "The administrator on here has also said that a raised tgab is not definitive of Hashimoto's". I'm not surprised you are confused....and sweeping statements don't help.

Instead of focussing on Hashi it might be better to focus on getting advice as to whether or not you are hypo...tho' that looks likely! I suggest that is your starting point.

Under these circumstances it would not be wise to attempt self medicating without first (as someone said to me) having all your ducks in a row....i.e thyroid tests done and vits and mins at optimum levels

Meantime however,if you are convinced you have Hashi then try following a gluten free diet, it won't do any harm and may help.

Just one of many GF info sources...

restartmed.com/hashimotos-g...

I'm afraid there is no quick fix for this problem....much time, patience and consideration is required. Not easy, but it works!

So....clear your mind of all the confusing info lurking there then go back to the beginning and follow advice offered.

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Yes thank you. I'm very happy with all the advice I have received. It's a huge help ❤ xx

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That is clearer re history of ailments..... Remember 'within range' for Vit D, b12, folate and ferritin may not be high enough for supporting good thyroid health - can you get/ post the figures? Fibromyalgia cannot be diagnosed with blood tests. Perhaps wait now till get other blood results back till re post.

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They won't give me the results, they are only telling me my vitamin D is 55, but all others they just keep saying they're normal, so I'm going to see if I can get the b12, folate and ferratin done privately, then I can see the results xx

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I don't know who you mean when you say "they won't give me the results".

You are legally entitled to a copy of YOUR data. Your lab results WITH the lab reference ranges are YOUR data. If "they" again prevaricate, remind them that it is YOUR data, that are legally entitled to it, and that you can/will report them to the ICO... and to the Dept of Health.

In addition to that, you can apply to access your records online.

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Oh ok, I didn't know that, thank you 😊 xx

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Just TELL them to give you the printout of your lab results WITH the lab reference ranges.

They are NOT entitled to ask why you want it. It's YOUR data and if you fancy papering your walls with it, it's your business - not theirs.

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Yes, I think I need to be a bit more assertive. Trouble is, I can go from so laid back I'm almost not breathing, to a psychopath in the space of seconds when I have to get assertive, then make a complete donut of myself. I am a fiery red head, or at least I was until I went grey almost overnight, and most of that has fallen out :/ However keeping my cool, is obviously not helping me at this moment in time.

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Best to take someone with you then, a man if you are a woman, as they tend to take men more seriously.

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Oh, well that's me out, because without going into a sob story, the only man that would be willing to come with me, but can't is my hubby. One of my daughters normally come with me xx

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That in itself is a hypo symptom, going from calm to mental and back!

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Graves!!!!???? With a free t4 of 8!!!?? About as likely as a donkey appearing on the moon tomorrow.

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Yes, when he said it could be Graves or Hashimoto's but not likely, I did say to him that I don't have any Graves symptoms, just Hashimotos, or hypo symptoms, but they just think it's all my head :/ xx

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Donkey appearing on the moon! LoL!

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and it looked from my results that I had had some infiltration

What do you mean by 'infiltration'?

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I was told this by a member on here. It was explained to me, but I'm not wonderfully bright, so only just got it, but I think from what I understood, it's where there have been attacks, making it temporarily hyper, and each time you have these infiltrations, it attacks the thyroid a little bit more. I apologise if I've got that completely wrong, but that's what I understood of what was explained to me, if that makes sense? It was because the ratio of ft3 / ft4 was not as it should be xx

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Sorry, but it doesn't mean anything to me. 'Infiltration' is not a word I associate with thyroid in any capacity. What infiltrates what?

It's the immune system that attacks the thyroid. And, after each attack, the dying cells deposit their stock of hormones into the blood, causing Free T4/3 levels to rapidly rise to 'hyper' levels. But it's not true hypothyroidism because it's not the thyroid over-producing. These high levels are only temporary, they go down by themselves as the excess hormone is used or excreted.

With each attack, the thyroid gets smaller, and you get more hypo. But, that has nothing to do with the FT4/3 ratio not being as it should be. I don't really think you understood that very well.

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I'll have a look for the original explanation, just in case I've got that wrong, and I'll copy and paste to here xx

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Yes, that would be a good idea. :)

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Yes I said I probably misunderstood. I'd like to blame it on a thyroid foggy brain, but can't even do that until that's proven. Anyway, here's what was said.....

Sadienerin,

TgAb 40 is positive for autoimmune thyroiditis (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_...

Your thyroid levels are currently euthyroid (normal). NHS won't usually diagnose hypothyroidism until TSH is >4 or FT4 <11.5.

FT3 is high in range which suggests there was a recent lymphocyte infiltration of the thyroid gland causing transient hyperthyroidism. After a while repeated infiltrations will have destroyed so many thyroid cells the gland will atrophy and be unable to produce sufficient thyroid hormone. 100-200mcg selenium daily is good thyroid support and along with 100% gluten-free diet may help to delay progression to hypothyroidism

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Ah, ok! I understand. Well, that's one way of describing it. But, I would have said that it was an immune system attack on the thyroid that caused the transient hyperthyroidism - but it isn't even real hyperthyroidism. I think the word 'infiltration' is misleading - especially the second time it's used. The rest is more or less correct and corresponds to the explanation I gave above..

However, I don't think that a recent attack - or Hashi's flare or Hashi's hyper swing, call it what you like but not 'infiltration' - would account for your high FT3, because if that were the case, the FT4 would also be high. :)

And now this thread has got so long and convoluted, I can't find your results! :D

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Haha, welcome to my world 😂I'm constantly searching for things, and get very very lost :/ 😊 xx

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That's lack of T3 to the brain! :)

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I'll take that as an excuse, although I think I may have possibly lacked t3 all my life 😉

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That is a very real possibility.

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Maybe "fibrillation"?

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No. :)

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Haha, I haven't got a clue, I just listen to what everyone tells me, and get confused :/ I wish I was cleverer, and understood it all xx

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You will, one day. None of us knew anything about this when we started out. We've all had to learn on the hoof. :)

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I hope so. It would be so much easier if I fully understood it all, or at least most of it x

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What a load of tosh! You can get hypothyroid symptoms from central hypothyroid (when the TSH DOES NOT and CANNOT rise). There is probably no such disease as CFS, only poorly treated hypothyroidism and adrenal problems. High TPO is probably more common than high TG antibodies, but only because the NHS doesn't bother to test TG. What ever you call the disease, it is an autoimmune disease. Endo sounds pretty useless - what does he think causes the very low free T4 then? Fairies? A witch's curse? Probably secondary/central hypo if TSH is not raised, so treatment is the same as it would be for Hashis or any other form of hypo, except that you should probably have an MRI to see it there is a pituitary tumour

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Thank you xxx Yes I believe the cfs and fibromyalgia, are undiagnosed conditions that they know nothing about, so slap that diagnosis on it. Ok, I will ask for an MRI, but don't think the endo's I've been talking to will do this, so will have to search for another. So few in my area though, unless I'm not looking in the right places xxx

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They don’t test for TG antibodies as 95% of those with thyroid antibodies have TPO so percentage wise you are unlikely to be the 5% that do.

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How do they know what percentage have high TG if they don't test TG - there could be loads of undiagnosed hashis people out there with high TG and not very high TPO. It's like saying that central hypo is rare so we only test TSH - yeah, so you never see the rock bottom free t4 and free T3 with low TSH (except by accident) so it's rare. NOT!

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That's true :/ xx

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Hi Sadie, It is confusing because there are so many factors which you have read. Someone mentioned adrenals which sometimes puts the brakes on your thyroid because you don't have the reserves for a higher metabolism which than affects your organs. I often post John Bergman's video about this and shows the collaboration between thyroid and adrenal glands. Often you have to be a detective and check all the areas. Your adrenals put out cortisol when you are stressed in different ways. High cortisol will put you in a fight or flight state and causes all sort of symptoms if you remain there. Functional doctors are realizing that working on the parasympathetic/sympathetic state is at the basis of most chronic disease. We actually have a nerve condition. It's complicated.

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It is possible my adrenals are out of whack because 18 years ago I donated my left kidney to my husband (sadly now failed), but I do know the adrenal gland is directly above the left kidney, and higher up on the right kidney. I have read sometimes that when they remove the left kidney, they sometimes either damage the adrenal gland above it or remove it along with the kidney. I do not know what they did in my case, and haven't had follow up's for about 15 years now xx

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Definitely get this investigated

If you only have one adrenal gland that could be effecting you

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Again it is something that I have said about on several occasions, and it's been pooh pooh'd, but I will insist xxx

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This is a coincidence. I lost my right kidney to cancer due to smoking I believe in my forties. I also had to find out a decade later whether I still had my adrenal gland and I do. I hope they still have your records. Eighteen years is a long time. That was wonderful of you to sacrifice it. A woman I golfed with this morning did the same thing for her husband. She is also hypothyroid so I do wonder about the effect. Dr. Bergman is brilliant and if you follow his videos you will know everything about how the body functions. His sage advice is pretty much the same. Careful what you eat and drink, meditate to get out of the sympathetic state and get good sleep. Simple, right? His videos on women's health, the brain and enzymes are excellent. He will disagree with conventional doctors on many levels and I guess I do believe in conspiracy theories. I use mine in order to get tests but I'm in the U.S. and I would never follow her advice, take statins, or blood pressure pills. We've had many series from functional medicine doctors. I did some summaries on the Thyroid Secret and a bit on the Broken Brain. They are on my profile page. This is what these conditions affect mostly because if you have inflammation and we almost always do, you will also have inflammation in the brain. Surprising the brain is 75% immune cells and now I see why. The mitochondria in the brain need lots of good fat and that's why coconut oil and oleic acids are so good. Dr. Kharrizian is brilliant about the brain and the cranial nerves like the vagus. There is a long learning curve, Sadie, and there is much trial and error unfortunately. This forum exists because it is so difficult to find doctors who know how to handle it. PubMed articles are great at showing the research. Another area where doctors fall short.

I'm thinking you could start supporting your adrenal gland/s. Licorice root if your BP isn't high, siberian ginseng seem to stimulate mine. Get outdoors each day to get melatonin so you can sleep. You might try Gaba if it's a big problem. I feel that you are at a tipping point and could possibly get your body balanced. Progesterone is big. Here is an article from Ray Peat who know hormones as well as Dr. Bergman.

raypeat.com/articles/articl...

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Thank you Heloise. I will look into this. I'm so sorry to hear about your kidney cancer and kidney loss ❤ xx

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I think we can both do fine with one kidney. I'm not sure about the adrenal gland so I hope you find out you have both of yours. Do try to learn as much as you can, Sadie. Lots of damage can happen when you go long periods with underactive thyroid. In my ignorant days my TSH rose to 3 while on treatment. I wish I had not put ALL my faith in doctors. Keep posting.

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Thank you ❤ xxx

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You were right and they were wrong. This isn't verified but seems to be well founded.

clinicaltrials.gov/ct2/show...

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Thank you all so much for your advice yet again. You have all been so helpful. Now time to get my head down and start putting my foot down too. Thank you xxx

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if you find it hard to be assertive with surgery staff in person - as many of us do - then the easiest way out of it is to write a letter to the Practice Manager and hand it over in person to the reception staff.

I got a copy of my entire GP record in 2014 and I only had to write one letter.

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Good idea. Yes I'm a bit of a coward custard xx

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I too was a complete coward until I realized that one stupid Endo was killing me with her ignorance. Suddenly, out of nowhere, I became so desperate that I just marched into the insurance offices and let them have it. I couldn't believe it was me speaking, but I felt that I only had about a week to live and I was fighting for my life. I think you will get to this phase at some point - and you will get your answers and action.

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Yes I can understand that totally. I've done just that for my husband and youngest daughter, who both have medical problems, but not for myself yet, but know I need to bring the tiger out soon xxx

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Looking at the results you’ve given it totally lsounds like central hypothyroidism. Central hypothyroidism is defined as a reduction in circulating thyroid hormone as a result of inadequate stimulation of a normal thyroid gland by TSH.

Go back to your GP and ask ho be referred to an endocrinologist that understands the thyroid and pituitary functions. You need to get your pituitary checked and be started on thyroid meds. The TSH will be a useless monitor then, they need to look at T4 levels and I’d suggest if they won’t check T3 to check that privately just to make sure you are converting adequately.

A good explanation of Central hypothyroidism and of interesting papers to show your GP below, may help.

Please don’t get freaked by the mention of pituitary tumours as they are nearly always benign.

gertitashkomd.com/blog/2017...

academic.oup.com/jcem/artic...

academic.oup.com/jcem/artic...

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According to my genova test, it said there was little t3. I'll try to upload the actual results if I can x

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😪😪😭😭This endocrinologist is awful. He's just phoned and said angrily that he'd phoned several times, and can't keep phoning, and he'd left messages. I told him that i'd only received one from him and that was yesterday evening, as he had the wrong numbers before! and all that message said was to refer to the last message which i wouldn't have got because it was obviously left on the wrong number! He talked over the top of me and said, no I called all the numbers on the system. I said again, yes, but they were the wrong numbers on the system!!!! So he said all your tests were normal, the thyroid function, lupus and RA, which I already knew. I said what about my antibodies?, so he said I already told you. So i said, no you didn't! He said i told you lupus antibodies were fine. I said to him that i meant my thyroid! which was actually what i was referred to him for in the first place as they were high!!! He said, yes they're normal!! So i said to him, oh, well they were high before, then he said, I don't test for thyroid antibodies!!! He's an endocrinologist!!!! So why doesn't he test for those??.? I asked why he wasn't testing them, as they could indicate hashimoto's, and he just immediately said, i've got to go now 😭😭😭 So now i've just got to deal with my hair loss, which means i have to wear a wig, my significant weight gain, which is having an impact on my osteoarthritis, and the aches, pains, extremely dry skin, and extreme tiredness alone 😪

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So I have now got my clinic letter, and they do feel the elevated tgab is either due to Graves or Hashimoto's. However he doesn't believe my symptoms are due to this as my thyroid function is normal. Instead he thinks it's cfs that is causing symptoms, although i'm not aware of that making your hair very thin, due to excessive hair loss, brittle and changing colour. I'm also not aware of cfs causing weight gain, and dry skin, but there you go. He said treatment can commence once my thyroid function starts to be affected by Graves or Hashimoto's. I suppose at least he is acknowledging that it is an atouimmune thyroid problem xx

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