Convinced I have hypothyroidism but GP won't listen to me......

[Piret]

I had my first child just over a year ago and a few months afterwards was diagnosed with postpartum thyroiditis. I was very hyper, constantly sweating, night sweats, losing hair, palpitations and losing weight. I refused treatment as they said it might come down on its own at some point being postpartum thyroiditis. Instead I had acupuncture treatments for awhile and after a month my blood tests were normal. My doctor was shocked, of course they dismissed the acupuncture. There was a period then when I felt ok for a few weeks and since then it has just gone downhill....

My blood tests continue to be normal range and I was dismissed from the endo care as everything is 'fine'. My last blood test last week was TSH 3.6 and T4 10.2. I pointed out to the doctor that in America over 3 is already hypo and she just ignored me. I also asked for additional blood tests for FT4 and FT3 and she said she has no grounds to request extra tests. I kept telling her how bad I feel - exhausted all the time, sleeping badly, night sweats, really bad PMS,nausea,chest pains, breathlessness,losing hair, constipated, not losing weight although my appetite is poor,constant headaches and pressure in my head and I'm cold all the time. I have taken my basal temperature for a few days and it's around 36.2. My pulse is also low 60s in the morning. The GP said most of these symptoms are not even thyroid related?! She obviously knows nothing about the condition. I am also very depressed and of course have been offered antidepressants which I refused and now I'm seeing a therapist, but they refuse to believe it's related to my thyroid. I feel depressed, but what I mainly feel is that I'm physically ill. I also have terrible bouts of rage and I'm not able to control my emotions at all.

One side of my neck is also swollen, strangers wouldn't notice it, but I do and so does my acupuncturist. He said it is swollen and I need an ultrasound, but how will I get one if the GP thinks I'm a hypochondriac?? I also have sore throat all the time and feeling of fullness/discomfort in my neck.

I'm just so desperate I want to have my life back and feel well again, I am planning to call Dr Peatfield's office and maybe get an appointment with him. I can't afford it really because I imagine all the appointments and tests will cost at least £1000 but I feel like a living corpse..... And I struggle to enjoy watching my son grow up because I feel so ill. I guess seeing a private doctor like him is really my only hope?

[hippochick]

You sound just like how I feel - Physically and mentally. I think go back and see another GP and take someone with you. If this doesn't work, private bloods may be an alternative option. But like you I can't afford it either! It is a predicament but persevere with the surgery. I know it's stressful and we shouldn't have to. Good luck

[Piret in reply to hippochick]

Thanks for your comment. Have you not been diagnosed either? What does your GP say and have you seen different ones? The surgery I'm at has many different GPs and I think last time I was unfortunate and saw a young/inexperienced/not caring doctor. She had a smirk on her face the whole time especially when I showed her Dr. Peatfield's book and asked for more blood tests..... I was so angry. What are you planning to do next?

[hippochick in reply to Piret]

My results were... TSH level is 12.8 mu/L 0.35 - 5.00 mu/L. T4 level is 11.8 pmol/L 9.00 -24.00pmol/L Borderline indication. Consider T4 therapy. I'm still fighting for treatment. Seen two gp's. took someone with me last week. However I tapered off sertraline anti d's. Which can raise the tosh level apparently. next blood in June. Like you said I feel so unwell physically and mentally. They didn't even ask me if I had any symptoms. Makes me laugh. Get your results and post them on here.

[HarryE in reply to hippochick]

Tosh level!! How very apt!

[hippochick in reply to HarryE]

Lol! Predictive text for you

[Piret in reply to hippochick]

I'm not surprised they didn't ask for symptoms, and even when I listed mine they said it's not related?! I just wanted to swear so badly. are you going to do the blood tests privately at least? I am going to see the GP again to demand an ultrasound, I have to take my partner along for support because I have no energy to fight them. And that is very unlike me - I always used to be up for a good argument

[hippochick in reply to Piret]

I'll wait until follow up tests in June. See what occurs thereafter!! If I get no joy I will have to self medicate with vitamins and minerals. But I have to admit, I find researching such agony

[Piret in reply to hippochick]

The research is hard.... there is so much stuff and so many potential things that could be contributing to the way you feel. I hope you get some help soon.... x

[hippochick in reply to Piret]

You too. Keep trying other GP's

[celtic11 in reply to hippochick]

You can purchase natural thyroid on line as I now have to. I have had a partial thyroid tony and feel as you do. A private thyroid doc put me on Armour and was then given it on the NHS for 9 years. Then they got in a number cruncher who refused to prescribe it. Armour is expensive but there is a generic brand of the same stuff called Natureroid. Use a place online called 'xxxx Pharmacy' as they are a good quality organisation. I'm afraid self medication is now the only option. Start with half a grain and VERY slowly increase until your symptoms improve. It will take a while. Forget the NHS. They MAY eventually give you thyroxine but you need the whole thyroid. By the way, whole thyroid or Natural Dessicated Thyroid is how under active thyroid used to be treated until the pharmaceuticalcompanies came up with a cheaper option I. e levothyroxine. Good luck

[ Edited by admin in line with guideline 23. Do not name pharmacies that supply prescription medicines without a prescription. ]

[helvella in reply to celtic11]

I think that the product you referred to is actually Nature-Throid.

It is not a generic. It is a branded medicine made by RLC.

See:

thyroiduk.org.uk/tuk/treatm...

[celtic11 in reply to helvella]

Thank you. It seems to have the same ingredients as Armour but is much cheaper. Because of this I assumed it was a generic form of Armour. Good to know it isn't. Can't understand why people buy Armour when Nature Thyroid and Westroid are the same thing. Do you know why that is?

[helvella in reply to celtic11]

There are several makes of desiccated thyroid. Each and every one has different ingredients. (Westhroid seems no longer to be available and was for some time identical to Nature-Throid.)

I'd argue that NONE of them is a generic medicine.

The price of Armour has risen dramatically in the recent past. To begin with blame was placed on a pig disease outbreak in the USA. This seems not to hold water.

[celtic11 in reply to helvella]

Many thanks. I take your word for it that they are not 'generic' but I guess my question is why are they so much cheaper than Armour? Am I getting a good quality NDT by buying a cheaper, non- Armour product. I was on Armour for 9 years through the NHS. They then refused to prescribe it. I changed surgeries and it's even worse. Even though I've had a partial thyroid extort and a para- thyroid removed, the doctor says my TSH of 4.5 is normal. So I've now bought my own NDT  but can't afford Armour as I live on a pension. Many thanks for your help and for this site. 

[Glenys in reply to Piret]

Same here - never asked for my symptoms, so last time I went in, I took a list of all my herbal and natural meds, and all my symptoms. Didn't make any difference though........

[Clutter in reply to hippochick]

There's nothing borderline about TSH 12.8 It is more than double the top of range! I very much doubt that tapering off Sertraline could cause that much rise. I'd be inclined to find another GP practice. Those two aren't looking after you at all.

[hippochick in reply to Clutter]

Tsh level 12.8 was taken before tapering off sertraline. So without it the tsh may be lower in June, when next test is due.

[Clutter in reply to hippochick]

I certainly hope so for your sake but I strongly doubt tapering off Sertraline will have caused such high TSH and fear your GPs don't know what they're talking about.

[HarryE in reply to Piret]

Hi piret, my TSH was 3.3 when first tested and I felt terrible. I have been off work for 4 months! Refused treatment by gp and endo, so have started self medicating and am almost back to normal. You will need to do lots of research, but you can and will get better. Xx

[Piret in reply to HarryE]

this is what I don't understand - some people feel ill even with TSH 2.5 and just get sent home from the GP office feeling like it's all in your head. And the range has been adjusted in America now where I would be diagnosed probably fairly easily, why in the UK the level is so much higher? When did doctors stop listening to patients? I'm glad you are doing better, but how are you treating yourself? Did you not see a private doctor? I think ultimately I need NDT but I actually need to get a prescription for that don't I? or did you manage to get it without one from somewhere? all the best. x

[HarryE in reply to Piret]

I've paid for my own blood tests, done all my own research, bought my own supplements to raise my dreadful levels, and now buying my own NDT too. It is possible to get it yourself. Obviously I would much rather have been treated by a doctor, and this was a last resort but I was so very ill that doing nothing was not an option!

[Piret in reply to HarryE]

May I ask where you get the NDT from? Sorry it's just all a bit new to me and all the research I've done I thought you need a prescription.

[HarryE in reply to Piret]

It is a prescription medicine, but you can buy it yourself legally. I'll send you a PM. But there is lots of work to do first to give you the best chance of success. You will likely have very low levels of essential vitamins/minerals which need addressing first. Can you persuade your gp to test ferritin, b12, vit d, folate and cholesterol (high levels are a hypo symptom)

[Piret in reply to HarryE]

I think my vitD is ok, I had it tested and it was low side but I've been taking it for months so hopefully that's not so bad anymore. The other things....no idea, it depends which GP I see this time.... I've no idea what to expect. But at the very least I will have the private thyroid tests done asap.

[maxart in reply to HarryE]

Ditto.

[celtic11 in reply to Piret]

You can buy it on line. Try '<named pharmacy>.' Yes self medicating is the only way now duvet other NHS thyroid black hole. Good luck

[ Edited by admin in line with guideline 23. Do not name pharmacies that supply prescription medicines without a prescription. ]

[maxart in reply to Piret]

Yeah.. I was on my knees with TSH 2.6, T4 15 and T3 1.3. Mild, compared to some here, but I felt half dead. Blood tests aren't the be all and end all for a variety of reasons (as you'll know having read Dr Durrant-Peatfield) yet symptoms seem not to matter. Sympathy!

[sheenah]

No No No - we are not giving up here - you have all the symptoms of hypothyroidism - including the rage. Private blood test via Blue Horizons - full thyroid panel £108 with TUK discount. My private doc in Winchester costs £168 for the initial consultation + £68 for follow ups - he has several clinics around the South - his premises in Winchester are right opposite Winchester train station. (London more expensive)-He prescribes and provides NDT. Get those blood tests and post on here. Also get a new GP!! I am so sorry my dear - it's just awful for you but you will find help and guidance here - it's your health - take control of it XX

[Piret in reply to sheenah]

thank you for your advice, I'm so relieved to read these messages here and feel like somebody understands and doesn't consider me crazy. I will do the private blood tests and put the results here once I have them. I found Dr Chapman who is fairly close to me and got an appointment beginning of June, however I'm still pondering whether I should see Dr Peatfield instead. The only thing I heard he can't prescribe NDT so even if he diagnoses me how would I get the medication? xx

[maxart in reply to Piret]

He will advise where to purchase x

[Clutter]

Piret,

Get a second opinion from another GP at your practice. TSH and low FT4 do indicate hypothyroidism while your symptoms and earlier thryotoxicosis scream hypoT.

You can get a private blood test for FT3 but another GP may decide a trial period on Levothyroxine would be beneficial without private FT3 testing..

Ring your practice and ask whether any of the GPs specialise in thyroid disease. If not you'll probably need to see one who specalises in diabetes

[Piret in reply to Clutter]

thank you, I will ring them tomorrow and ask about other GPs. I know there is one who is very open minded and knowledgeable but his waiting list is a month! I have to find a way to see a different one thought to the horrible cow I saw on Friday. What I don't understand is, when I was diagnosed with postpartum thyroiditis why are they so easily dismissing the possibility of any current problems or that it could in any way be my thyroid? it's not even like it's out of the blue because I have recent history...... so baffled....

[Clutter in reply to Piret]

Many GPs only have a few weeks endocrinological training and most of that is diabetes, so they dismiss thyroid dysfunction when bloods are within range, and contrary to NICE guidelines take no account of symptoms. The broad width of the range is so wide that this is actually a very sick joke.

If the next GP you see tells you your symptoms are not thyroid related you must dig your heels in and request a trial period of Levothyroxine or ask what s/he thinks is wrong with you and what s/he intends to do to help resolve your symptoms. It's disgraceful that a patient is expected to accept "it;s not your thyroid" as a diagnosis as if it will make them feel better!

Non-diagnoses like this force many people to self medicate by buying on the internet without prescription.

[Piret in reply to Clutter]

I know, I have to be strong. Will report back when I've seen a different GP..... I don't really want Levo, I want to take NDT but with a GP that's probably a complete dream?!

[Clutter in reply to Piret]

Many people do very well on Levothyroxine, my sister being one of them and she's just completed her first 5K run a couple of week ago.

I'd hold out for a diagnosis and try Levo for a few months. If it doesn't suit then you can try sourcing NDT on the internet. It's very difficult to get an NHS GP or endo to prescribe NDT because it isn't licensed for UK use. Many of them won't even have heard of it for that reason.

[annette12]

This is horrible pet keep fighting. Gps have not got the proper knowledge of thyroid diiease. It took 8 diff blood tests for me to be diagnoised was also postpartum had all the symptoms. Change surgeries if you have to, you shouldnt be going through this.

[Piret in reply to annette12]

8 blood tests??? did you have normal TSH levels too and may I ask what blood test actually helped to diagnose you in the end? I'm just so shocked about it all, I used to be fairly healthy before baby and never imagined I would have this to deal with. what kind of medication are you on and are you all better now?

[annette12 in reply to Piret]

My tsh results were always normal, but just by chance my last test showed slightly underactive. I was shocked it was under as i had all the symptons of overactive. I was put on levothyroxcine and doses

[annette12 in reply to annette12]

Sorry that sent before i finished. Doses were increased til level was normal. It took few mths for everything to stabilise. I have low calcium and vit d and being treated for that. Feeling bout 80percent better now. Its very shocking when you know its not in your mind and docs wont listen. Go private if you have to. Chin up honey i know hw you feel. ♥

[joannec123]

Hi, really feel for you, having same probs even endo isnt convinced I have hypo and wont do anything. You have so many symptoms its unreal. Your tsh is high and t4 low which indicates hypo... mine r borderline too... so annoying. Good luck x

[Piret in reply to joannec123]

Hi Joanne, thanks for your message. I actually forgot to write down quite a few symptoms so the list is much longer in reality!! it's ridiculous. and I'm only 28 I should be enjoying life and full of energy. they actually referred you to endo then? have you tried seeing a different doctor or a private one? I hate NHS. I had horrible problems with them before when my pregnancy went overdue and I refused to induce, the consultant basically said my baby will die and I discharged myself from the hospital. I now have a very healthy boy at home - as opposed to a very unhealthy mum :(( x

[joannec123 in reply to Piret]

Oh dear you have had a dreadful time then... basically, I started getting tired around oct last yr... gradually got worse plus other symptoms.... had to really push to get thyroid checked.... came back borderline hypo so she let me try levo. I felt better within a week. So tookvit for three months..then told her much better. But she said could be I need more hrt. So took me off kevo and upped hrt!!! All my sympoms came back! Not as bad. I asked to see endo. I did and he said im not hypo!! Annoying.

[Piret in reply to joannec123]

how can they say not hypo if the medication helped you and now you have symptoms again - how frustrating?!? did the endo just test your TSH? what are you planning to do now?

[joannec123 in reply to Piret]

Endo and the GP said the Levo can give you an temporary boost so that's what makes you feel better. The endo also tried to say it was just a PLACEBO EFFECT!! I wasn't happy with that comment!! when I started taking it it was like a huge curtain was lifted off me and I had so much energy like I used to do!!

Im not as fatigued now as I was when I first went to my GP about it all (Nov) im guessing that is A, down to the HRT being upped up so some symptoms have improved. and B, the levo I did take for 3 months maybe slightly still in my system or at least boosted my thyroid or kick-started it a bit.. guess time will tell.... but the hot flushes are well bad, I never had them before and had a hysterectomy 6 yrs ago!! x

[sezzledezzle]

I find this worrying but also a huge relief! I thought I was losing it! My GP got my bloods checked and failed to discuss in any length the details of the blood results but just reported all were in the normal range including the Thyroid.. Very frustrating and annoying as they told me it wasn't my Thyroid I stopped thinking that this was the cause of my symptoms! Until someone very recently in my work overheard me discussing my symptoms and said the were exactly like hers and that she had went private to get the diagnosis.. I was thinking this might be my route too.. I'm just fed up not knowing what wil help me to feel better!

[Piret in reply to sezzledezzle]

I think going private is really the only option unless you are willing to go from GP to GP and try again and again whilst continuing to be ill..... it's just so frustrating when we should get free help from NHS but instead are made to feel crazy and spend loads of money to have a normal life again.....

[joannec123 in reply to Piret]

I was thinking of going private too, but is that any guarantee that they will agree with us and say its our thyroid? wont they just use the same ranges and go by no's rather than our symptoms?

they all seem very reluctant to put us on Levo... they just say if you don't need it it can cause long-term health problems, including your heart.....

It is bad that they make you feel crazy, awful x

[Piret in reply to joannec123]

I think private doctors, especially the ones on thyroid.uk list go more by your symptoms and of course they use more comprehensive testing not just tsp.

[sheenah in reply to Piret]

Sorry - I thought this too. After today - no - much the same old crap - very expensive crap - lets test the TSH in 3 months crap - very dissapointed - just like going to see the GP - sorry too much to drink as well as a 200 mile round trip and half dead husband - no food stops on the A303 - I left him my book STTM -in the hope that he would read it - I doubt it - in the words of a good old Northern Farmer - "You can take a horse to water, but you cant make the bu**er drink, can you"..... Sionarra - I've probably spelt that wrong too... XX

[HarryE in reply to joannec123]

Joanne, if you do go privately, you need to make sure you go to a doctor that has a reputation for being more sensible, otherwise you will just be wasting your money. If you contact Louise at TUK she has some more details. Or ask for personal recommendations.

[joannec123 in reply to HarryE]

Thanks, I have the list from Louise, sadly not many in the SW area, but it is worth travelling anyway x

[silverfox7]

Words fail me! Shocking treatment. You must find another doctor.

[Piret in reply to silverfox7]

I know.... shocking is probably the best word for it. I will try to see a different doctor asap but I'm preparing myself for more disappointment.

[hippochick]

Ok so... My friend has just offered to lend me the money for private blood tests. Who should I use and are their details on here? thnx in advance

[Piret in reply to hippochick]

that's great, a good friend I haven't done them yet, but have been recommended blue horizon bluehorizonmedicals.co.uk/s... or there are some others here thyroiduk.org.uk/tuk/testin...

[Clutter in reply to hippochick]

Check out BlueHorizon and Genova on thyroiduk.org Don't forget to use the TUK discount.

[Muffy]

What time of day did you have your blood drawn? The earlier in the day the better as the TSH will be higher and could be the difference between diagnosis and non-diagnosis. As you had post partum thyroiditis, they should be taking notice of you. Anyone else in the practice that you could see?

[Piret in reply to Muffy]

My test was 3 pm, that's really not ideal is it.... I found out that one of the senior doctors who I found reasonable in the past is on duty tomorrow and I will go and see him. I'm taking my partner for support, plus printed out all my symptoms so I've tried to prepare. Will update how it goes tomorrow.

[Muffy]

Good idea to take someone with you.

Also take a look at this paper where they show the difference between early morning and mid-afternoon readings.

"According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon."

Endocr Res. 2013;38(1):24-31. doi: 10.3109/07435800.2012.710696. Epub 2012 Aug 2.

Clinical significance of TSH circadian variability in patients with hypothyroidism.

Sviridonova MA, Fadeyev VV, Sych YP, Melnichenko GA.

PMID: 22857384 [PubMed - in process]

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

Try to print this out and take it with you.

[Piret in reply to Muffy]

thank you for this, but I can't open this paper, it says error....

[Muffy in reply to Piret]

Federal Endocrinological Research Centre , Moscow , Russia.

Abstract

Objective. To investigate the clinical significance of thyroid-stimulating hormone (TSH) circadian variability in patients with hypothyroidism. Design. A total of 20 women with subclinical hypothyroidism and 22 patients taking l-thyroxine replacement therapy for hypothyroidism were enrolled in the study. Measurements of serum TSH levels were done twice a day from 08.00 to 09.00 a.m. and from 2.00 to 4.00 p.m. Results. The morning median TSH value in the patients with subclinical hypothyroidism was 5.83 mU/L; in the afternoon, it was 3.79 mU/L. The range of TSH circadian variability reached the level of 73%. According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon. The morning median TSH value in the patients taking l-thyroxine was 3.27 mU/L; it decreased to the value of 2.18 mU/L in the afternoon. The range of TSH circadian variability reached the level of 64.7%. Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples (p < 0.05). Conclusion. The time of blood sampling has an important role in the interpretation of TSH levels. Moreover, the high TSH circadian variability should be considered in discussions about the narrowing of its reference range.

[Piret in reply to Muffy]

thank you!

[Piret]

Ok, so I've seen a different GP, the most senior one in my surgery and had such a different experience. He straight away said my neck is swollen and I need to have an ultrasound. He also ordered another blood test to check antibodies and FT3. He did say though the lab might refuse the FT3 but hopefully not. He was also willing to refer me to the endocrinologist of my choice not just the one near me who I've seen before. It will probably be a long time before I get the apt and ultrasound but at least it will happen. A bit worried what the swollen neck will end up being.....

[HarryE in reply to Piret]

That's good news, well done! I had a lump in my throat and a swollen neck too, but it's all gone down on treatment so try not to worry. I think it was just swollen due to inflammation caused by working too hard. I have a very tiny nodule but I think most people do, they are quite common and usually harmless.

[Piret in reply to HarryE]

I feel relieved to be honest, I was starting to feel like I was losing my mind. I am hoping it's just inflammation and will go down with appropriate treatment. Now I just have to find a way to keep going until I see the specialist, these things always take ages!

[MLL59]

Try going to another hospital that don't know you and start again from scratch

[Piret in reply to MLL59]

yes that's a good idea and I will be doing that

[pkmr]

Insist that your thyroid antibodies are checked. This is very important and often missed by GPs when investigating Thyroid function. Following years of "there is nothing wrong with your Thyroid" and me feeling extremely ill, I insisted that I had a Thyroid Antibody test. Guess what, it came back over 1000 even though all other Thyroid function tests were fine. Panic then by my GP an I was sent off to see an Endocrinologist who confirmed that I had Hashimotos Auto Immune Disease. I am not saying that this is you but all test relating to the Thyroid should be tested before a diagnosis is issued. I now take Erfa Thyroid medication (which I have to pay for) because Levothyroxine never worked for me and have been taking Erfa for the past 5 years. You need to find a Doctor who will be happy to prescribe this (unlicensed in UK) medicine for you. Unfortunately my private Dr died last year but I have been lucky to find a GP who understands and is happy to prescribe this medicine. Good luck, you may have a long journey ahead of you.

[Piret in reply to pkmr]

thank you for your comment. I did have antibodies test last week and the doctor said the result was <20 so very low and I don't have Hashimotos according to him. I don't know what the antibodies were called, I will get a printout from the surgery soon. But the laboratory had refused testing a different antibody based on my TSH level saying that based on the TSH it will be fine and is not necessary. And of course they refused to test FT3...... so frustrating!!

[Hidden]

If your doctor won't help you then try to see another that will or just self medicate. You will have to check your bloods privately. I have never been diagnosed but my t4 and T3 levels were at the bottom of low. I just gave up with GPs and got so ill I had to do something about it. I got a test back in 2007 and they told me it was normal, then the GP after that refused to test me. I believed them but carried on deteriorating. I was really unaware of TSH T4 and T3 and just assumed the doctors were doing what was in my best interest. I was very wrong and glad I woke up and self medicated.

[Hidden in reply to Hidden]

Hi Katie, don't know if you still post on here, but please could you message me about self medicating? My t4 and t3 are also low but apparently normal according to docs...argh! Thanks!

[Hidden]

oops just noticed this is from 2 years ago....sorry bit late.

[Pastille in reply to Hidden]

Lol!! I often do the same

[beccabobbles]

Don't mean to be a scaremonger but please demand a scan Of the lump...you have my sister's symptoms and hers turned out to be cancer. She has had full thyroid removed and is out the other side doing super well but please don't let them palm you off. They are doing the same to me but I don't have the lump so it's just frustrating for me as I have ALL the symptoms