Low tsh levels : Hi again everyone , just got... - Thyroid UK

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Low tsh levels

Sweetpea1157 profile image
68 Replies

Hi again everyone , just got part of my blood results back from private endo but wasn't given any variencies, my FT4 was 14.6 and T3 was 4.4 and we're classed as satisfactory , but my tsh was very low at 0.104 . The tsh receptor antibody was not detected . He has suggested that my levothyroxine should be at 75ug 100ug on alternate days . He also suggested that looking at my blood results over the last 15 months that I may of had episodes of hyperthyroidism.

Now , after doing some intense reading about tsh levels , i have found that I have what is known as exogenous thyrotoxicosis , basically , I am centraly hypothyroid and sublingualy hyperthyroid , anyone confused yet ??lol cos I am , any thoughts on this please . Also read that if tsh levels are constantly low , i should be having blood tests regularly ( every 6-8 weeks ) until tsh levels are optimal , yet the endo has suggested that I only be reviewed annually .

What I didn't inform the endo of is the fact that I self increased the levothyroxine to 100ug daily around 5 weeks ago , now my voice is not so raspy and the lumps and swelling on left side of neck have subsided but am still quite tender to touch , but don't know if it's for that reason . I am still feeling very fatigued , appetite is up and down like a yoyo, hair still dry and breaking off , eyes still very red , gritty , dry and very sore and are starting to give me headaches , there is much more going on with my body but would be here all night if I tried to explain it all , in a nutshell, i just wish I could get back to being myself again . Any thoughts and advice would be very welcomed 😕😦

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Blossom13 profile image
Blossom13

Hi there, I have just received my own results too with the same questions you have and will also be doing a post. My GP keeps wanting me to lower my T4 dose due to my TSH being suppressed, but frankly I'm feeling much better than I have for a long time. I take 100mcg of T4 and 5mg of T3 daily. However I keep reading that the TSH can be lower due to a variety of reasons and in fact in the comments section of my own lab results it lists other possibilities such as pituitary issues, however the GP's ALWAYS assume that TSH is suppressed because we are overmedicating. I also found The Tired Thyroid book and blog sheds some light on this and she is very good at backing up all her info with references. Here is a link to a good article as she found that her asthma disappeared when her TSH was suppressed but her FT4 and FT3 were in range, but her asthma always returned when her TSH was raised back in normal ranges as per her GP's wishes. It's a worthwhile read, but of course 'different strokes for different folks' - I understand. It's about finding what works for you. tiredthyroid.com/tsh.html I absolutely cannot believe I am overmedicated like my GP keeps telling me as I had been putting on a little weight and feeling so much better (not perfect, but improved). All the best to you as you find your way on this journey.

Sweetpea1157 profile image
Sweetpea1157 in reply to Blossom13

Thanks for the reply Blossom 13 , like wise here , dont think the gp's have a scoobies about what they are doing , I was contemplating taking T3 , but as already suffer with osteoporosis significantly, not sure that that would be wise under the circumstances, although I have been suffering for years , i am very new at this , am only just beginning to understand a bit more about my thyroid problem , and that's a huge thank you to everyone on here , I am at present looking in to obtaining books , but trying to find one that's not too overwhelming and easy to understand . I will look into the book you have just mentioned though .

Hope all goes well with you on your journey aswell and hope you find some of the answers you are looking for on this forum . Take care and thankyou

silverfox7 profile image
silverfox7 in reply to Blossom13

If you are taking any form of T3 then your TSH is expected to be suppressed but the important reading there is the FT3 as it will. E the only accurate one and should be high in its range but never over. Results are read differently if taking T3

Sweetpea1157 profile image
Sweetpea1157 in reply to silverfox7

Hi silverfox, thanks for replying , am not on T3 at the moment , but it is under consideration.

greygoose profile image
greygoose

The tsh receptor antibody was not detected .

Why would he test for TRAB when you're taking levo? People only take levo when they're hypo. If TRAB was positive, you would have Grave's, which is hyper. Just having a low TSH does not mean you are hyper. You are only hyper if your TSH is suppressed and your Free are very over-range. We cannot tell if your Frees are over-range without the ranges, but I doubt they would be high enough to constitute a hyper state. And, if you are hypo, you cannot suddenly become hyper, the thyroid doesn't work like that. That's a simplification, but still.

after doing some intense reading about tsh levels , i have found that I have what is known as exogenous thyrotoxicosis , basically , I am centraly hypothyroid and sublingualy hyperthyroid

A TSH of 0.1 on its own does not constitute 'exogenous thyrotoxicosis'. Your Frees would have to be high - same as mentioned in the reply above. And what ever is 'sublingually hyperthyroid'?

Also read that if tsh levels are constantly low , i should be having blood tests regularly ( every 6-8 weeks ) until tsh levels are optimal , yet the endo has suggested that I only be reviewed annually .

I don't know where you read that, but I think you've taken it out of context. Once you are on thyroid hormone replacement, the TSH doesn't count for much. The most important number is the FT3, and it's very difficult to get the FT3 in the right place to make you well, and the TSH in range. Any doctor that tries to do that doesn't know much about thyroid, and would be keeping you unwell.

Although, to be honest, your endo doesn't sound much better if he only wants to test once a year when you're obviously not optimally medicated. It really does sound as if you're very under-medicated, but impossible to say with any certitude with the ranges. You should always make sure you get the ranges, because without them the results are useless. :)

Sweetpea1157 profile image
Sweetpea1157 in reply to greygoose

I am phoning the endo tomorrow to request the complete blood tests results including the ranges will get back to you with this .

As for the tsh info I read it got that info from endocrine website.com and mdedge.com>endocrinology . Are these sites not trustworthy ?? Just asking as as you know am new at this and with everyone's help am only just starting to understand a bit more . I don't know where to turn to for help , the NHS is a total waste of space in all fields and I don't have the funds to keep paying for private consultations , so what do I do ?? Being on here helps a lot , because unfortunately I'm not the only one here with a similar situation and am so overwhelmed by everything , not getting the proper answers from any of the medical profession, any suggestions greygoose please , don't know how much longer I can carry on like this , just want to be myself again

greygoose profile image
greygoose in reply to Sweetpea1157

I'm afraid I don't know either of those sites. I looked at them just now, but I have no idea which articles you read. As they are all written by different people, there will inevitably be some good and some less good.

You're not getting any proper answers from the medical profession because they don't really know much about it themselves - yet think they do! The only solution is to learn all you can and be your own advocate. And, if all else fails, self-treat.

Sweetpea1157 profile image
Sweetpea1157 in reply to greygoose

Thanks for getting back greygoose, sorry not been much help with sites , will get back to you tomorrow with more info as am just off to bed , also would like to discuss with you about self medicating ie T3 etc etc

Speek to you tomorrow ☺

greygoose profile image
greygoose in reply to Sweetpea1157

Good night. :)

waveylines profile image
waveylines in reply to Sweetpea1157

Hmmm I agree with grey goose you are under medicated. Glad you are going to get the full results with ranges as that is important. Your symptoms are typical of someone who is undermedicated & basing your results on the most likely ranges supports this. However the lab ranges vary from lab to lab so its important you get them.

Any doctor or Endo who prescribes by the TSH will inevitably under medicate you. They should be going on ft4 & ft3 levels, ensuring that both are in range, but near the top & how you feel. Sounds like if you hve been medicating daily at 100mcg for 5 weeks you are likely to need a further increase.

Why didnt you tell the Endo how much levothyroxine you are taking? He/she does need to know as the next increase will be based on what you are taking & your blood tests plus symptoms signs.

If you keep your ft4 & ft3 in range then no harm can come to you. A wise knowledgeable endocrinologist once told me this. I take a natural dessicated thyroid extract.

I dont understand your comment on osteoporosis? I have the same condition as it runs in my family -it is not due to thyroid medication.

Sweetpea1157 profile image
Sweetpea1157 in reply to waveylines

Thanks for getting back to me waveylines, dont know why I didn't mention levothyroxine , but i knew he was going to be contacting my GP surgery , and they are just treating me with total contempt right now , basically like a lot of people on here a " depressed hypochondriac " .

About the osteoporosis, i wasn't saying thyroid meds caused this , after reading up on T3, i was unsure that this was going to be safe for me to take ,as I already suffer from some of the side effects of T3, That was all I was asking advice on before I did start taking it . Another thing I did forget to mention to greygoose was something else the endo had said to me , he said , when I had the RAI all them years ago he thought I was started on levothyroxine too quickly and after examining my neck and throat he believed that the thyroid had not been totally destroyed and I still had ( all be it a small part ) a partially active thyroid , obviously I don't know what that means or how it affects me and the way im feeling at moment , hoping someone can enlighten me please

Thanks once again waveylines ☺

greygoose profile image
greygoose in reply to Sweetpea1157

Sweetpea, how can you suffer frome the side-effects of T3 if you don't take it?

We won't know if you need to take T3 until we see the ranges for those results. Could be that you are converting T4 very well, and just need an increase in levo. But, if you do need it, it won't affect your osteoporosis. Bones need good levels of T3 to be healthy.

It's quite possible that a little of your thyroid remains. But it won't produce much hormone. If it did, you would see it on your blood test results. But, taking levo probably suppresses its small production, anyway. :)

Sweetpea1157 profile image
Sweetpea1157 in reply to greygoose

Hi greygoose , thanks for getting back to me , I'm only relaying what I am reading , to be honest I don't understand it at all , it's so complex and because when you are reading things from www Web sites they keep giving you links to other sites instead of it being all on the same site , it's so blooming confusing having to go back and forth from site to site , that why I question a lot of what I read to the people on here , as you are all more clued up than I'll ever be and it helps in some ways to understand a little of what I have read . I guess I am trying too hard to find answers to my present conditions , as am not getting any from med profession, as said previously , docs treating me like a depressed hypochondriac, and keep telling me my condition is nothing to do with my thyroid . 😕

greygoose profile image
greygoose in reply to Sweetpea1157

Yes, well, doctors know even less than you do!

But, I think you're trying to run before you can walk. Those sites are incredibly difficult to understand unless you have the basics - I found the article I was trying to read very confusing. You need to start at the beginning, and build your understanding up slowly, like taking levo! Start low and increase slowly. Or you're just going to get more confused. Best to start by reading all the posts on here, and the replies, to get a better understanding, and leave those professional sites until you have a better grounding.

It's also difficult for people to help explain unless they know exactly what you have been reading. So, please always give links to the precise article you're asking questions about. :)

Sweetpea1157 profile image
Sweetpea1157 in reply to greygoose

Hi greygoose how are you this evening , yes you're right maybe we're trying to run before we can walk here , well my partner is , but getting back to basics , let me see please if i have picked this up right , basically I should be more concerned about the levels of my FT4 and ft3 rather than the levels of my tsh ?? Now , as my FT4 and FT3 are all within range , but i still feel like I've been hit by a bulldozer , if you were in my shoes ( which you'll be thankful you're not as im only a size 1 and they would give you cramp ) , what steps would you be taking bearing in mind that I already take 100mcg levothyroxine daily for last five weeks , vit K2 which you had advised me to try which I have been taking for just over 4 weeks and 1 good sign is that the lumps and swelling on left side of neck have subsided, but generally I still feel very ill , think i have given you all my symptoms as they are at the moment .

I don't think the docs are going to be of any help as they are saying they are only going to review me annually, and at the end of the day your advice has been more helpful , would quickly just like to say , I do read the posts that people put up on the forum , and find them interesting and informative .

I think it is only fair that I inform you that I have a lot more going on with my body than just the thyroid and graves issue , I don't know if they have any bearing or effect on what we have been discussing so far and maybe you can dismiss most if not all of them , my present conditions include , Osteoporosis, Sciatica, spinal stenosis, and high blood pressure . I hope I'm not putting you on the spot , but your help and advice is deeply appreciated, thank you ☺

greygoose profile image
greygoose in reply to Sweetpea1157

basically I should be more concerned about the levels of my FT4 and ft3 rather than the levels of my tsh ??

Absolutely, yes - especially the FT3.

Now , as my FT4 and FT3 are all within range , but i still feel like I've been hit by a bulldozer , if you were in my shoes what steps would you be taking bearing in mind that I already take 100mcg levothyroxine daily for last five weeks

I have absolutely no idea, because you still haven't given us the ranges for the FT4 and FT3. I would imagine you're still under-medicated. 100 mcg is not a very high dose. But, if you've been taking it for five weeks, I would say wait another week and get a retest. See where you are now.

my present conditions include , Osteoporosis, Sciatica, spinal stenosis, and high blood pressure

The only way to know if something is due to your hypothyroidism is to see if it goes away when you get on a higher dose. Your high blood pressure could very well be due to low thyroid.

For the spinal stenosis, have a look at this:

ncbi.nlm.nih.gov/pubmed/268...

And the sciatica could be due to the spinal stenosis. So many things are inter-linked.

Just saw this in one of your other replies:

was recently told by endo that the thyroid was not totally destroyed by RAI as i was started on levothyroxine too quickly after procedure.

That sounds very weird, to me. I can't really see the connection. So, I would take that with a pinch of salt, if I were you. But, I really don't think that has any bearing on your present situation.

Sweetpea1157 profile image
Sweetpea1157 in reply to greygoose

Hi greygoose , i am in the process of trying to obtain my full blood results and ranges from private endo , we called the hospital but apparently he is away on holiday at moment and I will need to request these directly from him via email , as for getting a retest , well let's just say I'm not going to hold my breath , dont think gp will entertain this , so will probably have to go online to do home test as you mentioned before , which one would be the best for me to do at this time please.

Thankyou for the link to spinal stenosis , i know this is nothing to do with the thyroid , it was the result of a bad fall from climbing up on something 2 years ago , I know that my lack of sleep is partially down to the thyroid but also the pain from the spinal stenosis and sciatica is also contributory as im unable to take the pain killers they offer me because they make me ill .

Thankyou for your help once again greygoose , am going to say goodnight at this point , but will chat again tomorrow, if that is ok .

Night night ☺

Marz profile image
Marz in reply to greygoose

Hi Greygoose - was keen to read your link above re stenosis - sadly it wouldn't work for me. Will type it out longhand ! :-)

greygoose profile image
greygoose in reply to Marz

In case that doesn't work, either, here's what it said:

Association of spinal degenerative disc disease with thyroid autoimmunity.

Shrestha A1, Cohen HW2, Tagoe CE3.

Author information

Abstract

OBJECTIVES:

Autoimmune thyroiditis (ATD) has been linked to various forms of arthritis. The relationship with spinal degenerative disc disease (DDD) is not known. We studied the association between ATD and spinal DDD.

METHODS:

We performed a cross-sectional analysis of patients who had data on both anti-thyroid peroxidase antibodies (TPOAb) and anti-thyroglobulin antibodies (TgAb) from January 1997 to January 2014 in Clinical Looking Glass (CLG), a data analysis software platform. Spinal DDD was confirmed by radiological diagnosis.

RESULTS:

Of the 7698 patients for whom the TPOAb and TgAb values were available, 4383 patients with complete data for the following covariates; age, gender, race, ethnicity, smoking, diabetes, body mass index and thyroid stimulating hormone (TSH) levels, were included. Thirty-three percent had ATD, while 67% did not. The unadjusted odds ratio (OR) of having spinal DDD with ATD was 1.5 (95% confidence interval (CI)1.3, 1.7), p<0.001. After adjustment for covariates, ATD remained associated with a higher frequency of spinal DDD, OR 1.8 (95% CI 1.6, 2.2), p<0.001. Stratifying by BMI and TSH levels showed similar results. Additional analyses excluding patients with known connective tissue diseases and spondyloarthritis (SpA) also showed consistent results.

CONCLUSIONS:

ATD is associated with increased frequency of spinal DDD independent of BMI and TSH levels, and among those without connective tissue diseases or SpA. This finding suggests that there may be an important link between thyroid autoimmunity and spinal DDD.

Marz profile image
Marz in reply to greygoose

Thank you so much :-) Sounds like me ! Had not searched before with stenosis being connected to Hashimotos - only a connection with Low B12. But then Low B12 seems to follow Hashimotos like night follows day ! I had surgery for stenosis back in 2007 ...

greygoose profile image
greygoose in reply to Marz

Yes, so much is inter-connected.

in reply to Sweetpea1157

Depression is a common symptom of hypothyroidism

Sweetpea1157 profile image
Sweetpea1157 in reply to

I'm too depressed to even think about that one lol 😃

in reply to Sweetpea1157

But not too depressed to see the funny side sometimes. Which is a very good sign :-) .

I haven't been depressed as such, but on first getting obvious hypo symptoms (it must have been coming on for years) I would sit for hours on some days with not even enough energy to think any interesting thoughts, let alone do anything, even watch a video or read. It was a dull, dead utterly boring experience.

Sweetpea1157 profile image
Sweetpea1157 in reply to

SNAP !!!!! Sounds sooooooo familiar

At the moment am like that most days , but probably also down to lack of sleep. ☺

Sweetpea1157 profile image
Sweetpea1157 in reply to Sweetpea1157

Night night , let's hope we all have a better night

AnneEvo profile image
AnneEvo in reply to greygoose

I assume she meant subclinically not sublingually 😀

Valarian profile image
Valarian in reply to AnneEvo

Obvious now you mention it !

AnneEvo profile image
AnneEvo

I think you've got a little mixed up. As I understand it, when you first start taking levo you should be tested every 6 weeks until you are on the correct dose, rather than because TSH is low. Though you and your doctor may not agree on what that dose should be seeing many people feel well when TSH is suppressed but doctors don't like that for some reason.

MaisieGray profile image
MaisieGray

"I have found that I have what is known as exogenous thyrotoxicosis , basically , I am centraly hypothyroid and sublingualy hyperthyroid"

I think you've maybe misunderstood what you've been reading. Exogenous means having an external cause, and thyrotoxicosis means too much thyroid hormone, so exogenous thyrotoxicosis simply means you've ingested too much thyroid med and flooded your system with thyroid hormones. So it's not an inherent medical condition but the result of taking too much Levothyroxine. However, even without the reference ranges, the numbers indicate that to most definitely not be the case. By sublingually hyperthyroid I think you might mean subclinically hyperthyroid. If you do indeed have central hypothyroidism with a secondary or tertiary cause such as say, a pituitary tumour for instance, such that the otherwise healthy thyroid isn't stimulated to produce adequate levels of thyroid hormone, you can't be hyperthyroid.

Sweetpea1157 profile image
Sweetpea1157 in reply to MaisieGray

Thanks for getting back to me maisiegray, maybe I am getting myself totally confused . I am trying to learn and understand my condition and what is going on with my body right now , but the reading is so complex and overwhelming and I think in some cases contradictory so it is very hard to make head or tail of it , i am learning much more from people like yourself on this forum . All my thyroid probs started over 30yrs ago , and not once has anyone in the medical profession taken the time to explain anything to me , hence my nievety . Had a flare up like this 11yrs ago and totally put my faith in docs thinking they knew what they were doing , this flare up is much worse and docs keep fobbing me of saying that it is nothing to do with my thyroid. That's when I found this forum , and it has been so helpful ☺

MaisieGray profile image
MaisieGray in reply to Sweetpea1157

Sweetpea1157 I've just quickly read through a previous post and your dialogue with greygoose, and it seems that some years ago you had RAI treatment, which presumably destroyed your thyroid. In which case, irrespective of any dysfunction with your pituitary gland or hypothalamus, your thyroid having been destroyed is the cause of your hypothyroidism. And without a functioning thyroid you certainly can't be hyperthyroid although you could become over-medicated with too much Levo. However as I understand it (I've not had it myself) the RAI can also be administered to reduce some, rather than all thyroid function although I don't know how precise partial ablation is, or how common is that approach, in order to guess if your thyroid was partially or fully ablated. But have I understood your previous post correctly, that you were diagnosed with Graves' disease, as a result of which your thyroid was ablated, and you then became hypothyroid as a result?

Sweetpea1157 profile image
Sweetpea1157 in reply to MaisieGray

Hi Maisey Gray, yes you are correct in your accessment , but was recently told by endo that the thyroid was not totally destroyed by RAI as i was started on levothyroxine too quickly after procedure.

Valarian profile image
Valarian in reply to Sweetpea1157

Quite possibly the thyroid wasn't completely destroyed by the RAI, but not sure how starting you on levo 'too early' could have affected this. Presumably (hopefully !) they tested your thyroid levels (FT3 and FT4, not just TSH) before prescribing the levo, and then retested at regular intervals?

Sweetpea1157 profile image
Sweetpea1157 in reply to Valarian

Hi valerian, thanks for replying , to be honest I don't have a clue , over 30yrs ago I was fealing very unwell , spent the next 3 years just being told I was stressed with work load and children , then i asked for a blood test and at that point discovered I was hyperthyroid, was then treated with carbimazole, and after around 12 - 18 months was given the RAI , in all this time nothing was ever explained to me except that they preferred me to be underactive after around 8 weeks was prescribed levothyroxine , it took a very long time to get me stabilised and for me to start feeling human again , at that time nievely just put all my faith in docs thinking they know what they're doing. 11 years ago , maybe longer , had all the symptoms again , except this time they were a lot worse , after a long time going back and forth to gp's, they in the end sent me to see a consultant , he just said , I've seen this before and told me it was an AID and graves , he sent me to a doctor who dealt with thyroid problems, they tweeked about with my levothyroxine for some time again and eventually I returned to mainly being myself again , but was still being nieve , thought everything was in hand . Now here I am again , all the same symptoms , some of them even worse than 11yrs ago , but now got lumps in left side of neck and swelling , hair breaking off etc etc . Sorry this has been long winded , ( hope you're still awake 😴😁 ) but wanted to give you a clearer picture as to what's been happening even though I'm unsure myself , all I can say is that being on here has helped me significantly . ☺

vocalEK profile image
vocalEK

I don't believe there IS any such thing as an "Optimal" level of TSH. There are optimal levels of thyroid hormones (T3, T4, etc.), but TSH is a pituitary hormone. Its job is to tell the thyroid gland to get busy to produce more T4. If you already have enough T4, the message is unnecessary for YOU. Therefore a level below the "average" makes perfect sense. I found this article easy-to-understand: verywellhealth.com/understa...

Sweetpea1157 profile image
Sweetpea1157 in reply to vocalEK

Hi vocal , thank you for that input , it is hard to intemperate what it all means , in my case I have had thyroid disease for over 30yrs, my recent tests show that my tsh was low 0.104 but my FT4 was 14.8 and FT3 4.4 which were classed as normal or within range , yet , I still feel like I've been hit by a bulldozer .

Thankyou for that info though ☺

vocalEK profile image
vocalEK in reply to Sweetpea1157

Just "in range" isn't good enough. We need to be Optimal. What is your lab's range for FT3? It may be that you have low T3 syndrome. Most folks don't feel well until their free T3 is at least above the midpoint of the range, but preferably in the top 25% of the range. (Subtract lowest number of range from highest, divide by 4 to determine quartiles of the range. To calculate mid-point, multiple the quartile number by 2 and add to the lowest number. That's the half-way point between the top and bottom numbers of the range. To calculate top 25%, multiple quartile by 3 and add to the lowest number in range.)

Sweetpea1157 profile image
Sweetpea1157 in reply to vocalEK

Hi vocalEK, thanks for replying ,

My FT3 range is 3.0 - 6.0 , my latest blood test said my FT3 was 4.4 , which according to the endo was satisfactory , am taking 100mcg levothyroxine daily. Am going to get a retest in a couple of weeks, to get all counts and ranges .

Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to Sweetpea1157

Many patients on Levothyroxine need FT3 at least over 5 on that range

Valarian profile image
Valarian in reply to vocalEK

Good link :)

Sweetpea1157 profile image
Sweetpea1157 in reply to Valarian

Thank you ☺

Maggie29december profile image
Maggie29december

In terms of biochemistry, Greygoose is spot on almost every time. Where I disagree is the doctor bashing- it’s inane like nurse bashing or blaming the AA saying they don’t know how to change a tyre.

Knowledge takes a while to spread and insulting others generically has no place in society.

There are some incredibly helpful people on this forum and greygoose is one. But can we stop the name calling? Most doctors, like painters, welcome enlightenment.

Sweetpea1157 profile image
Sweetpea1157 in reply to Maggie29december

Hi Maggie29 , yes you are right , greygoose is generally spot on , as for the dishing of the medical profession, yes i agree , there are some in the profession who do try and help , but unfortunately, there are many who don't , which is very sad , my latest experience with the docs enforce that presumption, because they just won't listen or take the time to understand your symptoms .But thankyou for getting back to me .

greygoose profile image
greygoose in reply to Maggie29december

It's rude to talk about people behind their backs.

Sweetpea1157 profile image
Sweetpea1157 in reply to greygoose

Hi greygoose, it's me again , how are you today ?? As im feeling totally deflated sorry to say .

Just got bill from private endo , what a total waste of time and money ,

30 min consultation = 200

TSH test = 36.75

FT4 test = 36.75

Phlebotomy = 30.00

T3 test = 54.00

Anti TSH receptor antibodies

= 70.50

-------------------

Total cost = £428.00

We thought that a lot more tests were going to be carried out ie folate , ferritin etc etc , in hindsight glad they weren't done , dread to think how much bill would of been if they had been , even though I think i needed all tests done and ranges given , another lesson learned I guess . Will have to look at doing diy tests for definite, are there any you could recommend please , thanks again for your help greygoose 😕

greygoose profile image
greygoose in reply to Sweetpea1157

Not surprised. The private hormone specialist I saw cost €450 around 12 years ago - and that was without any tests! Dread to think what he would cost these days. But, at least he was a little more helpful than yours.

I would never advise anyone to see a private endo, unless they knew in advance what that endos views were on thyroid. Or he came highly recommended by someone you knew and trusted and has the same problems as you. They just don't get the training in thyroid necessary to be able to help a difficult/complicated case. All they know how to do is prescribe levo and get the TSH back in range. Anything else is a mystery to them. And, it's not doctor-bashing to say that. It's fact.

Sweetpea1157 profile image
Sweetpea1157 in reply to greygoose

Hi greygoose , thanks for getting back to me, yes , definitely think I've learned a hard lesson with that one , any advice on DIY blood tests please , will do that in next 2 weeks then post results on here .

Thanks again ☺

Oh ps , i definitely don't think you're doctor bashing , you're being honest , and I've been at the butt end of docs supposed care for quite some time now , it's nice to hear some honest views and see some success with some aswell .

zyz987 profile image
zyz987

I have same issue as you... My only difference my TSH is 0.01. And I still have symptoms of hypo... like having zero energy some days or swollen face and head... My FT3 and FT4 are in the lower half of 'normal range' and still my endo thinks I take too much medication (I am taking both T4 and T3)...

I changed my dosage down myself recently and my TSH did not react as much. like you change t4 from 125 to 100 and TSH only grows like from 0.009 to 0.01. The only difference from dose change was getting less energy and having horrible mood swings...

My endo thinks I am hypochondriac and 'sends' me to psychiatrist time to time... But she refuses to test behind TSH, FT3 and FT4...

Sweetpea1157 profile image
Sweetpea1157 in reply to zyz987

Thanks for replying zyz , personally I'm not on T3 , but otherwise same as yourself, unfortunately am not able to advise you on what you could do as I am still pretty new at this and am still in the learning process, but I'm sure there are people on this site that will be able to help and advise you, hope you get sorted soon , but in the meantime take good care ☺

SlowDragon profile image
SlowDragonAdministrator

Endo sounds as much use as chocolate teapot.

Have you had vitamin D, folate, ferritin and B12 tested?

TPO and TG thyroid antibodies?

TSH is supposed to low in range on Levothyroxine. Most important results are FT3 and FT4. Essential to know the ranges

Recommend you get FULL private testing of thyroid and vitamins after 6-8 weeks on CONSTANT dose of Levothyroxine

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

£99 full price test

£79 when on offer

Sweetpea1157 profile image
Sweetpea1157 in reply to SlowDragon

Hi slowdragon , yep , total waste of time and money , and not even getting results I was needing , that was a hard pill to swallow . No none of them tests were carried out ( we thought they were going to be though ) , so , will do home tests in 2 weeks , then post results on here as soon as I have them . ☺

SlowDragon profile image
SlowDragonAdministrator in reply to Sweetpea1157

I had several similar and expensive experiences.

Getting vitamins tested regularly and supplementing to bring to optimal

Come back with new post once you get results

Did you have Graves originally? Then RAI?

If so are you on strictly gluten free diet now?

If not suggest you consider it, ideally blood test for coeliac first just to rule it out

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

Sweetpea1157 profile image
Sweetpea1157 in reply to SlowDragon

Hi Slowdragon , im not sure about when graves started , but i would say they were more effected after the RAI , i was never told anything until around 11yrs ago when I was taken very ill , it was at that point it was mentioned that I had an AID and graves . As for being totally gluten free, no im not , but i do include a lot of gluten free foods in my diet , I generally cook all my meals from scratch and include fresh vegetables all the time and also try to eat fresh fruit . I have read somewhere that there are certain foods that are a must to avoid , think they're called crucifix vegetables , could you help with some advice please .

As for testing for celiac testing , i know for certain that the gp's is definitely not going to entertain that one , so how would I go about getting that please ?? ☺

SlowDragon profile image
SlowDragonAdministrator in reply to Sweetpea1157

You need to eat high level of gluten ideally at each meal for few weeks before testing

You can buy a coeliac blood test online. It's an easy test

healthcheckshop.co.uk/store...

Most likely it will be negative, but it's best to test first just to rule it out. BEFORE going strictly gluten free

If gluten is a problem, it does need to be absolutely strictly gluten free as explained here

chriskresser.com/the-gluten...

If after 3-6 months on strictly gluten free diet, if you don't notice any improvements then, suggest you reintroduce gluten and see if symptoms get worse

We can eat most crucifix veg, just not too often.

The only one best avoided by any thyroid patients is soya. Even including avoiding soya lecithin (hidden in masses of things). Read all labels. Don't worry You can find chocolate with no soya! Some Green and Black is soya free but not all, and most "Divine" chocolate, for example

Sweetpea1157 profile image
Sweetpea1157 in reply to SlowDragon

Thanks slowdragon again , will look into getting test done and get back to you with results . And will look into the links you gave about gluten . You must be psychic , how did you know I'm a closet chocoholic, will look into the chocolate you mentioned as at moment Ferrero rochet is my demon .

Thanks again SlowDragon ☺

SlowDragon profile image
SlowDragonAdministrator in reply to Sweetpea1157

Ferrero rochet look like they have gluten and soya in ☹️

There's these.....probably have soya though

freefromheaven.com/2018/07/...

Sweetpea1157 profile image
Sweetpea1157 in reply to SlowDragon

Thankyou sooooooo much, never knew , right , I'm off to Asda , you are an angel ☺

Cooper27 profile image
Cooper27 in reply to SlowDragon

They have soya lecithins:

schaer.com/en-uk/p/tempties

You can buy them in Asda and some co ops :) they are alright, but for the price, it's a once a year kind of treat!

SlowDragon profile image
SlowDragonAdministrator

Recipe to make your own, once on gluten free trial

glutenfreecuppatea.co.uk/20...

glutenfreecuppatea.co.uk/20...

Gluten free opens up some exciting new cooking and baking ideas

Sweetpea1157 profile image
Sweetpea1157 in reply to SlowDragon

Thanks again SlowDragon , im sure my partner will enjoy having a go at them , he already makes gluten free seeded bread , so this will be a new challenge for him , thanks again ☺

Sweetpea1157 profile image
Sweetpea1157 in reply to SlowDragon

Thankyou for the like slowdragon , let's hope all goes well with blood test ☺

silverfox7 profile image
silverfox7

Been following your post and a rather rocky ride in places and yes it can be a huge learning curve. The other thing to remember though that even following the right path it can be a time before you notice the difference and hopefully improvement. It's taken you a long time to feel as you do so it can often take an equally long time to reverse things. Try not to get despondent, that's just how it can be. But you are doing the right things, asking questions and sharing your symptoms. It's the best way to learn but listening to your body and asking for advice but also remember we can all present things in different ways as well. I do have some sympathy with the doctors as I've always felt you can't really u derstand the problems without actually experiencing them yourself but some doctors don't use common sense or are afraid of giving you too much medication but leave you to remain unwell by doing so. The testing is woeful in a lot of cases as well and being inadequate doesn't leave some of us in a good place. Don't worry about Osteoporosis either as that can occur if you are over medicated which I'm sure you would notice if that happened. Tgecadvice to get your vits etc tested is relatively more recent advice and has made a huge difference to me. But as we Thyroid sufferers lose such things from our bodies it makes sense to supplement to feel well. Always request copies of any results though so you can follow how things are changing, hopefully for the better and remember the resultsxneed the ranges as they differ from lab to lab.

Sweetpea1157 profile image
Sweetpea1157 in reply to silverfox7

Thankyou silverfox for that nice reply and for the words of encouragement , yourself and many other people on this forum are so wise and helpful , don't know where myself and people like me would be without this forum and people like you

Thankyou ☺

silverfox7 profile image
silverfox7

Well many of us have had to learn, experiment and see what works for us. So we are more than happy to share our experiences. It's all about getting to know ourselves as well. My big break though wasstarting to have cravings and decided to ask Dr Google what it meant when I was craving chocolate-forgotten what the other thing was but they were both symptoms of being short of Magnesium so that convinced me to look into levels of this and other things. I have many food intolerances as well so it made sense and I've never looked back. I think something else we have to remember is how good the food is which we eat. I grew up learning about farming methods and crop rotation and leaving a field fallow to recover but we are over populated and farming land is overstretched so it's highly likely out diet could be suffering. Often, as well, produce isn't as fresh as it might have been so I agree that your bodies would welcome some help to keep us well, don't want to mention the B word but we are now being told that food from abroad could well need extra time to reach us so less fresh.

Sweetpea1157 profile image
Sweetpea1157 in reply to silverfox7

Thank you silverfox , thats a nice reply . Sorry took so long to get back to you, i agree about the b word , it's as confusing as my thyroid probs , makes my BP go through roof .

It is definitely harder already to find fresh produce and also lately , dont know if you have noticed this , they are not putting use by dates on the packaging anymore , so i sometimes buy frozen berries and things like spinach and mixed veg , but i would rather eat fresh . I do take supplements, i take K2 , magnesium , selenium , VIT D , And have got B12 , but not taking that at moment till after my next blood test ( which I'm doing myself at home ) in next 2 weeks . Do you happen to know the best magnesium to take , at moment I take 250mg from H&B . And is it OK to take all the supplements at same time ?? Thankyou for your help again ☺

SlowDragon profile image
SlowDragonAdministrator in reply to Sweetpea1157

Many on here use Calm vitality magnesium powder. It's cheap and easy to use. Good if you tend to suffer constipation, (common hypo issue). Best to start on low dose and increase slowly, as too much can cause diarrhoea

Magnesium, iron, HRT, vitamin D, calcium all need to be four hours away from Levo minimum

Magnesium best taken afternoon or evening (depending if you take Levothyroxine at bedtime)

Vitamin D mouth spray can be taken with less time gap as its absorbed in mouth not gut

Sweetpea1157 profile image
Sweetpea1157 in reply to SlowDragon

Hi slowdragon, sorry never got back quicker , will take on board all you have said about vitamins , generally take my magnesium in the evening and the rest around late morning / lunchtime , including K2 .

Thanks for getting back to me ☺

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