After visiting my GP tonight I'm told that she contacted the endo and he confirms, 'the best marker for thyroid disease is TSH, as yours is 'normal' (2.4) all of your symptoms are not thyroid related. Your low ft4 (11.7) and out of range ft3 (high) are NOT SIGNIFICANT and must all be due to you being hypermobile'.
I'm agast and totally beaten now. Six years of pain, cold, hairloss inc eyebrows, swollen tongue and digestive probs and let's pass the buck again.
I'm done with all this and yet still really hope for all of you out there that someones head eventually rolls for this.
Is there any point? No!
Written by
tulula59
To view profiles and participate in discussions please or .
tulula, I totally agree with you about the rolling head, it stinks, sucks, its pants, that right!!!! you clearly have hypothyroid smptoms, my TSh was a little over yours and still within the normal parameters. Shity TSH test, is absolutely worthless and even more crap when specialist are going by out dated markers.
Yes there is a point, patients like you and I are determined to get well, despite how we feel. I too have been doomed by the bodies at b, I have decided to hit a different route, difficult I know.
Have you had your antibodies tested TPO and thyroglobulin? any one of these elevated will be Autoimmune D ( hashimotos) ?
I have swollen scollaped tongue, reflux problems, IBs, and a load of other smptoms.
They pass the book because they have no idea, that Hyporthyroid has loads of different health complaints.
I can not be a victam of this horrible suffering, I want to be a survivor. This needs to stop and there is a debate going on in the scottish parliament about the almighty TSH and how its worthless. Maybe you could print it of and send it the Endo.
Maybe someone will repost the site about this, its really useful and very accurate, I cant remember the email address.
please get some information and have antibodies tested ( private ) The Endo is not qualified enough, therfore you need to educate him.
good luck hun, there is a point and you will get there big hugs.
Thanks for the input - I'm just so out of steam. Yes, anti bodies for TPO only came back as 9 so 'normal'. The other type wasn't done. Is there a way to get the second type tested privately?
It was the out of range ft3 that she spoke to him about in particular.
I hate it so. I'm perfectly educated, a mother of a disabled teenage son and his full time carer, quite capable in normal life but this has just ground me right down.
I know we shouldn't need to make all these waves and I've done my fair share over the years, active with the Scottish petition etc but just feeling like this is my lot - the constant burning pains around my joints, the incessant IBS and tongue swelling etc.
No doubt my irritation will morph into action again some day but it's just too hard today.
What have they said about your tongue swelling? They said mine was due to IBS and that my diet should be changed. I did everything they said but it hasn't gone away at any point. I was discharged two years ago.
It was only by asking for more tests last Sept and then again two weks ago that the GP knew I was still suffering. The trouble is so many of the other symptoms do meet the hypermobility syndrome criteria also and I am very mobile I know - always have been. But never in all this pain all the time.
What is your diagnosis and how are you coping/not coping with your tingue situation. You are the first person who I have heard that does actually have this symptom.
I had the swollen tongue, Tulula. My tongue was so huge that I used to wake myself up every night by biting it. It was horrible! My tongue was so sore from being bitten and I didn't know where to put it in my mouth, always had my mouth slightly open.
But at the time, I was ignorant, I knew next to nothing about hypo and had a doctor who was even more ignorant than I. He kept my TSH at 9.5 because he didn't want me 'tipping over' into hyper - you've got to be extremely hypo to appreciate that joke! So, I didn't know that my swollen tongue was a hypo symptom, so never mentioned it to him. And as he never looked at me, there was no chance he would have noticed it!
I finally got him to send me to an endo - who was also pretty clueless, but he gave me a little T3 and my swollen tongue went back to normal.
I'm so sorry to hear that you are caught up in this dreadful situation with these gormless morons. They know nothing! But, to be fair, they haven't been taught about symptoms (thank you, big pharma!!!). Take a little time to rest yourself before you try anything else. Be kind to yourself. You will win in the end, I know.
Thanks for that. Trouble is now my ft3 result is actually out of range high so I shouldn't be having any probs at all. In fact the endo also said that indeed I must actually be hyper! This is despite a very low ft4 of 11.7.
Surely to God (or whoever) we are not suppopsed to be the ones with the knowledge!
Whether God designed it that way or not, that's the way it is.
You don't happen to have the ranges for those frees, do you? I'm wondering just how high and how low they are. What is strange is not the high T3 with the low T4 - that could just mean you are converting particularly well - although that in itself would be unusual. No, what is strange is the high T3 with the high TSH. It's not exceptionally high, but it is high - never mind what ignoromo says about it being 'in range'! A truly 'normal' TSH is 1.25.
Are you absolutely sure that there is no possibility of there being a mistake in the results? Did your doctor just tell you the results or did he give you a print out? Ask for a print out, and if the numbers are the same, ask for a retest because this is dubious. Well, that's what I would do, anyway. I'd make a nuisence of myself until they'd do anything to get rid of me. I have done this in the past, and it worked. The worst thing you can do is give up.
Yes I have a print out. The ft3 is shown as 6 in a range of (2.5 - 5.7) the ft4 is 11.7 in a range of (9 - 24). TSH is 2.4 in range of (0.2 - 4.5).
Is this any help?
I have thought I'd get it all rerun privately. Blue Horizon looks good but I'm over 100 miles away from any Spire Hosp. Do we know of anyone else who does full TFT testing privately?
OK, so it's not drastically high, and the FT4 is not drastically low - well, it is a bit. In any case, you're not hyper, I shouldn't think. (Actually, I'm sure, but always like to add that bit to be safe! lol)
I'm afraid I don't know anything about private testing in the UK. You might want to ask in a seperate question so that people can see it. But I certainly think it would be a good idea to get it done privately.
Another thought, what time of the day were these tests done? The best time is early in the morning, when the TSH is at its highest. Could make all the difference.
That would have been my next option but thankfully a friend is in 'the business' and has offered to help me out with this. Tests have now been ordered through Genova.
Thanks for the heads up though. If she can't do it for any reason after all then I have a BMI fairly nearby.
After last night's downer I'm back on the up for getting this sorted in the end.
Put in a complaint in writing to your GP's Surgery. Stating this is a formal complaint about misdiagnosis and that you were dissatisfied with your GP's attitude. Add failure to treat patients or take seriously costs more money than actual active treatment. Plus on exactly how is your GP going to treat your other symptoms as his/her denial is not an affective treatment plan.
Also send 1 in to the hosptial where your Endo is, along same lines.
Ask for a 2nd opinon at your GP's and Endo. Not everybody is an idiot, there are some left with brains attached.
Make wave, complain, they have to look into it. They hate getting complaints about their medical practices.
Thanks for the input. I will try and find some strength again from somewhere. Just don't quite know where yet.
As I have said to merissa right now it seems futile. Thanks again though. Keep the faith yea!
You may be interested to know:
Dr Rudolf Hoermann and John E.M. Midgley have very recently written papers showing that the TSH ranges taken from the population in general should not be used for individuals. They have devised a model that shows that TSH is not log-linear as previously thought -
"Recent evidence questions the log-linear standard model of the TSH-FT4 relationship and suggests that more complex modelling may be more appropriate."
Just seems we are all fighting a losing battle with this and sometimes the energy for it just isn't there. I will take some time to recover no doubt. I will also write to someone to try and get it in writing that these symptoms CANNOT be due to hypermobility and go from there maybe.
Great that they have done this but of course the whole mind-set needs to shift. Not just one person.
Hi I know it should be NHS but sometimes the only way is to pay for TSH, T4 and Free T3 yourself. I use Blue Horizon, well known Lab, if you quote TUK 10 ,it is £61, very easy, then you can show the GP or any doc your proper results.thyroiduk.org.uk/tk/te.
I hope this works, otherwise insist on seeing a decent endo, of your choice! Do your own research and do not go by GP`s choice.
Best wishes,
Jackie
To reply to anyone click on " reply to this" otherwise we will not know!
Thanks for the input. It's very difficult down here as Dorset seems to lack any decent endos. The only one that has any sympathy it seems is on the board of the Brisitsh Thyriod Ass who of course still swear by the TSH as the best marker and support non-treatment under a value of 10.
I'm really stuck for travelling as I'm a full time carer too. Just not sure of a way out of this.
Hi, Yes I can see that would be a problem.Can you start with getting the proper tests done? Then perhaps time to get tough with GP. Ask for a trial for 3 months to see if it helps ( you know it will!) Failing that is there a better , more sympathetic GP in the practice? one that is not afraid of his/her own opinions? I had no treatment for years. useless GP and I would hate any one else to be in the same position. In those days no, site, info, private cheap blood tests, they all needed authorisation from a doc. However, when I finally had the correct tests , the 3 were done as routine then , I did after many years, get treatment,, because although TSH normal , my FT3 was below normal, T4 OK. , then. I have severe auto immune Hypo ( Hashimotos) The other alternative, is to pay for a proper diagnosis from a good endo of your choice and travel, may be followed by a phone consultation. However, you choose, not the GP. Make sure it is some one good and take all relevant tests with you, as you do not want to pay for any private tests, very expensive that way. Also ask the charge before you go. It is so important , to feel well.The endo will need referral and then will tell the GP what to do! If you tell endo not insurance, they will be happy to do this.
Jackie
The high t3.... - . You need to get your free t3 and reverse t3 checked..... Could be that you are doing a rubbish job of converting t4 into t3 and so are landed with high reverse t3. The fix is to take t3 only but this is rocket science to the endos. Private testing is really the only way. It should be less than £100 though.......
It is a sorry state of affairs in that we have to learn about thyroid conditions in order to get well as the medical profession seem not to know how to diagnose by clinical symptoms and they rely only on the TSH only for diagnosis..
When thyroid hormone fails to suppress the cells normally, they release too many water-binding molecules into the ground substance of the skin and other connective tissues. These water-binding molecules are a complex of protein and sugar. Researchers used to call them "mucopolysaccharides," but most of us now call them "glycosaminoglycans." The excess number of the molecules holds too much water in the connective tissues. The excess water expands the tissues, causing them to feel and appear puffy
I am not medically qualified but I would think if your TSH is not supressed you are not on enough for you. I doubt it can be diagnosed through blood tests This is a link and if you read question dated December 1, 1997 (it may be little complicated) it may give you an idea about resistance.
In case there is any confusion - I'm not on anything. The results are all from a non-treated individual. I'm assuming that this issue can exist independent of being in the receipt of 'treatment'?
My tongue has been heavily swollen for over 7 years along with all of the other symptoms (hairloss, eyebrow loss, cold and fatigue). The endo who spoke to my GP about the high FT3, low FT4 and rising TSH said these were not symptoms related to thyroid dysfunction!
Also, the link doesn't appear to be working but I think I have read this. What I'm saying I suppose is can thyroid resistance occur before/without medication or is it a term for an inability to process the medication only?
After a bit more reading it seems that yes, swelling of the tissues can certainly occur in people with other thyroid symptoms and not necessarily undergoing 'treatment' of any kind.
Inadequate Thyroid Hormone Regulation as the |Mian Mechanism of Fibromyalgia: A review of the Evidence. Lowe.J, Yellin.J. 2008
The link was working earlier but it is an archived site and they may be working on it at present.
The Endo who said that what you have are not thyroid symptoms knows nothing. Just as well you are not seeing him. As for resistance I think if your thyroid gland is working normally that wouldn't happen but someone may correct me.
Hi again, the test you will need is thyorglobulin, ( blue Horizon) it might be worth having the advanced test, t3 t4 and antibodies.
Im in a bit of a battle at the min, with the gp, just gathering my evident test, with most of them elevated not just the TSH, potassium, PH. I have had to find all these medical health issues myself as thats what we all do as NHS wont test for anything out side the box.
in terms of treament, none at the min, to be honest I have hashimotos and there is no treament other than meds that wont work.
There are different co factors that can be causing issues, b12 issues, candida, leaky gut, the list is endless.
I have to make a huge change in my eating habits, find out everthing that I am lacking or need, minerals, vitamins, adrenal, so on.
All my TSh was normal, but my thyroglobulin isnt, its anibodies that are attacking my immune system, as a result I will eventually become hypothyroid, when my gland is destroyed. Hence other issues.
I was firstly diagnosed with fybromyalgia, then health anxiety, lol as the TSH had always been normal, until I got the antibody test, my TPO was normal but the other wasnt.
Debating whether to have another test and submit that as well with my huge case study. Then I am on my own. x
Merissa, Dr Toft said that if you have antibodies:-
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.
If you need a copy of the whole article which was in Pulse Online email louise.warvill@thyroiduk.org send it to your GP to read before you make an appointment to see him.
HI shaws, thanks hun, I was put on Eltoxine 25mcg and my blood test 10 weeks down the line shown I was hyperthyroid now. ummm now my blood test are showing hypothyroid. I have been told by a medical profession that only on of the antibodies need to be present TPO or antithyroglobulin with goitre and smptoms for a diagnoses of Hashimotos. xx yes your right I am headed for thyroid failure, I will read this post later.
You said in your first comment on here that you 'have taken a differnt route', what did you mean?
You sure seem in a pickle too! It's not just us who are trying to get on the wagon in the first place but also all you poor souls who are still struggling so very much even though you've got a seat. It must be a nightmare for you.
I've just finished reading yet more research in a bid to try and understand what is going on out there and this recent review of 30yrs of research concludes that treatment with t4 alone is of no use to around 50% of hypothyroid patients. I know this is yet another area where disagreement exists.
It discusses 'Thyroid Hormone Regulation as the Main Mechanism of Fibromyalgia' (Lowe J and Yellin J 2008) and has some very interesting points.
From what I can gather everywhere, the endo's are stuck in the past, the GP's are too afraid to step out of line for fear of having to validate thier decisions to the heirarchy and the patient is the only one doing any real investigations.
I've spent a huge amount of money and time over the last 7 years desperate for someone to listen properly, experimenting with very strict diets (not a weight issue but supposed food intolerances that were suggested as the reason for my tongue swelling) and so much effort in trying to understand my own health that I can only conclude that the world has gone completely mad.
The explosion of CFS and Fibromyalgia correlates far too well with the introduction of the TSH test and we are the ones left to suffer.
Don't get me wrong I'm truly happy to have running water and a roof over my head but when you talk about quality of life I'm owed about 12 years and counting.
Do they think we want to feel ill? That we all wouldn't want to be bouncing out of bed int he morning looking forward to the excitment that each day should bring?
Notwithstanding the occasional case of Munchousens, as far as I'm aware the people like us on these forums want to be part of an ordinary life and we are being denied this due to the whole misguided idea that we are in fact hideous nerotics with nothing better to do.
...check out Mucin - fluid found beneath the skin in patients suffering from suspected thyroid illness in days of old. Long before testing became de rigeur ! Hence the word Myxadema ....sorry about the spelling !...again a word not used these days.
Mucin is what gives the classic swollen tongue with a pie crust edge.... (scalloped).... it is definitely a sign of hypothyroidism but one which has been forgotten by the doctors/
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My cheese is sliding off my cracker! 
Explanation of what *high TSH is telling us when our fT4 level is ''normal' on Levothyroxine ~ the Shoe Size analogy. (* over 2.5/3 ish )
Blog #2 - So, What About TSH, FT4 and FT3?
Thyroid Hormone Blood Tests - Whats the Point????
Told T3 is fine, but is it?
