It's not my thyroid causing my symptoms

[Elaine22]

Hi all. Back to docs this week. He tells me I'm in the normal range, the 50mcg is correct. So I've challenged him on my dry eyes aching joints, muscle weekness, not sleeping, still putting on wieght. He said that's the only medication levothyroxine, and blood results are at right level. So my problems r not thyroid. So he has sent me for u&e, creatinine, iron, b12/folate, vitD. FBC&diff. Will these help me. I'm thinking of getting a private blood test on t4.tsh.t3. Results next week, will be interesting. Keep up the good work all

[PinkNinja]

Can you make sure you get the actual values for your thyroid test. You may be within the normal range but there may be scope for an increase in dose and that increase may make you feel better. For example, a TSH of 4.5 might just be within the normal range but you are unlikely to feel well with your TSH this high. An increase of 25mcg, or even 50mcg, might make you feel significantly better and will cause your TSH to drop but it might still be in the normal range. If both doses have you in the normal range for TSH, which one is right? Of course it's the one that makes you feel well. This is why your doctor's argument is ridiculous. I would ask for an increase in dose and see how that goes.

It is good that your GP is doing those tests. Please make sure you get all the results with reference ranges and post them on here. The NHS ranges are often far too low for these and you may need to supplement even if you are in the "normal" range. B12 in particular!

I hope you get answers soon!

Carolyn x

[Elaine22 in reply to PinkNinja]

Thank you x

[Elaine22]

Thanks Caroline. I know my tsh last result was 4.33 and cholesterol 7.7 I got print out at docs, t4 missing off page. Will try to get results next time I go. Was prescibed simvastatin. Took for 2 weeks. Had headache and more aches.

[shaws Administrator in reply to Elaine22]

Hi Elaine

If you want to reply to a particular comment/person, you have to click on the blue "Reply to this " otherwise the person may not be alerted that you may need a reply. When you press Reply etc a new box opens for your reply.

[Elaine22 in reply to shaws]

Thank you

[marram in reply to Elaine22]

Simvastatin (or any other Statin) is contraindicated for anyone with thyroid problems, it nearly killed me. It's in the Patient Information Leaflet.

Also, it is to treat high cholesterol which is one of the many symptoms of untreated hypothyroidism.

Whatever the 'ranges' the particular Lab quotes, that does not look like a good TSH for optimally treated hypothyroidism.. Dr Toft's book page 88 is the best guide to go by. It convinced my doctor to increase the levo and it is already helping me. If you can get hold of it ('Understanding Thyroid Disorders' available from Thyroid UK or even Amazon, about £4) it could help you talk to your doctor.

Marie XX

[hafdisuna]

There is a site on the internet called "Stop This Thyroid Madness" you should go there and read about this. This is a groub of sick people who are helping people like us. You can also post your last bloodtest there and they give you feedack. I hope you understand what I am wrigting, mu english is not very good

[helvella Administrator in reply to hafdisuna]

Welcome,

You know we here are also a group of sick people helping people like us. People also regularly post their blood test results here and get some feedback.

Many people here do know of the STTM site - some may even post there. But many prefer a UK-focussed group for many reasons. And, though it does have a lot of information, that site can be very USA-focussed and very desiccated thyroid-focussed. Which is not always what people want or need.

Your English is quite understandable.

I am wondering if you would consider putting some words together to explain what it is like in Sweden and Iceland for thyroid treatment? We often end up complaining about the UK but few of us have much experience elsewhere. I would be happy to read through before posting if you feel uncertain with your English. Send me a Private Message if you wish.

Rod

[hafdisuna in reply to helvella]

Hi Rob. I am so sorry if I was doing something wrong by posting this here. I can see that now this site is the same and even better because it is not in Europe not usa. So I am glad I found you here. I will see a new doctor next week so after that I might have something to tell These 3 yrs since I started on Levaxin have not en good for my. Sometimes I wonder if I am slowly dying. I do not have strength to do my housework any more so my husband who is fighting his own battle with lung cancer do all purchases for the home. I can hope fully tell you more about my illnes after I have spoken to the doctor week,

[helvella Administrator in reply to hafdisuna]

That's really, really tough.

No need for apology - and yes, being European does make it different.

Feel free to post when you are ready.

(To help make sure we don't mis-understand you, do make clear in any posts that you are in Sweden. We tend to assume everyone is here in the UK. )

[Elaine22 in reply to hafdisuna]

Thanks will look at this site

[Elaine22 in reply to hafdisuna]

Thank you will check it out. ??

[Ansteynomad]

Presumably your GP also doesn't know that raised cholesterol is a sign of an un- or under-treated thyroid?

Prescribing statins as a knee jerk reaction is not the answer.

AN

[Elaine22 in reply to Ansteynomad]

Thank you. We know its the thyroid it's trying to get the gp to understand. He asked me twice if I was depressed. I gritted my teeth. I have friends that are hypo, they just live with there diagnosis. All of us want a better quality of life. My social life on hold, because I save my energy for work.

[Marz]

....what is normal for one person is not normal for another. Being in the ranges laid down does not mean everyone fits snugly into them. It is simply a GUIDE and your doctor should be listening to the things you tell him about your self - as they had to in the days before blood tests controlled doctors practice. For us older members of this forum we well remember when docs asked us to poke out out tongues, a wooden spatula examined the tongue, throat, necks and jaw were palpated, nails checked....looking for signs of so many conditions that impact on our lives. Medicine should be an ' art ' as well as a science.

Do take a look at Dr Sarah Myhill's site - if you have not done so before - and check out what she has to say about cholesterol......it's interesting and of course thyroid is mentioned. Of course there is a great deal about Cholesterol and having thyroid problems on the net - but she does throw up some extra information I was not aware of before.

Look forward to hearing your results - and lets hope someone here will be able to help. It could be that having good levels of B12 and VitD and the others will help you a great deal. Don't let your doctor tell you that when they are just in range that all is well - the results need to be OPTIMAL - at the top end of the range as you have a thyroid problem and absorption may just be impaired.

[alangardner in reply to Marz]

as a relative computor idiot [ and proud ] ,but someone who's long term lady has suffered from ,as we now know , over-- and then --under active thyroid problems.........and we are in the process of getting the CORRECT treatment ------- thankfully we have a super gp as well as me being reasonably inteligent [ hopefully ] i would like you to give me directions---idiot form please---to dr sarah myhills site......if it dosn't help us at least with the info it may be possible for me to advise or direct someone in the future.......i have learnt so much in the past three months about this I WOULD NEVER HAVE BELIEVED IT !!!!!!!!!! ...........when my lady started with this problem i honestly thought that it was something like 'a bad back' or the like......but with the info and experiences that i have had in the past year [ thank the good lord it's only been 1 year ] i feel i know more about this than many of the so called 'ENDOCRYNOLOGISTS' ......but i am always open to others experiences to help our situation....after all that's what this site is all about !!!!! i look forward to hearing from you when you can ........alan & kim

[Marz in reply to alangardner]

....... drmyhill.co.uk should find you on your way ! From memory to find the piece on cholesterol you will need to click onto Heart problems and then when Cholesterol is highlighted in a different colour click onto it and hey presto you should find it ! good Luck..............

[alangardner in reply to Marz]

thank you so much...lol

[rosetrees]

When I was retested in January my TSH level was 2.6. My GP said it was normal and I didn't need to increase my levo. I said to him "aren't we aiming for a TSH level of 1 once I'm on the treatment". He nodded sagely and offered me the option of increasing by 25mg or 50mg.

I chose 25mg initially and my world changed. Try pointing out to your GP that once you are on treatment the aim is a TSH of one. See what he/she says.

[diggingit in reply to rosetrees]

Hi Rosetree, can you tell me some more information about the TSH of 1 when treated correctly, is this in a book or written paper ?

[rosetrees in reply to diggingit]

I think it was probably something a friend told me. She "functions best" (her words) when her TSH level is 0.8. I think, also I might have read it somewhere here, or on another forum. To be honest, I can't remember, but my GP didn't argue. (This is the same GP, I now know, who has ignored my elevated TSH levels for 5 years - I have my blood test results.). Just found this gpnotebook.co.uk/simplepage...

[diggingit in reply to rosetrees]

ammunition, thank you rosetrees.

[sadiestairwell]

I love this website! I'm still at the stage of reading and learning but it has been of immense help to me in fighting for recognition and treatment of hypo problems. Thank you all.

[alangardner in reply to sadiestairwell]

i couldn't agree more , just think how good it can get when we all learn more with the help of everyone together with the support from this site and everyone on it lol

[loopymoo]

Elaine, your TSH of 4.33 would be classed as Hypothyroid in my health authority (our maximum is 4.2). I mean, WE all know that TSH is just a tiny part of the story but it seems crazy that one person gets treated as hypo, but another gets told it's nothing to do with the thyroid when they're the same TSH......especially when doctors put so much faith in the TSH test.

[Elaine22 in reply to loopymoo]

Thanks I'm on 50mcg the result was 4.33 but he didn't increase. I'm like everyone else. Just want to feel better. I will get blood done private and c what they recommend.

[loopymoo]

It's a shame you couldn't get rt3 done at the same time. You must ask your gp to get referred to an endo. He will test your adrenals as well as bone profiles, u&e and glucose.

[Elaine22]

Thanks, I sat with doc for 20 mins, but he knows less than me lol, he said levothyroxine the only med. and my range is ok. Hence it must b something else. Lets hope he doesn't develope hypo.

[alangardner in reply to Elaine22]

maybe we should log a register of sypathetic gp's that either know about thyroid probs or the possible effects to recommend to others on this site. i can assure from personal experience 'some' do not conform to the horror stories that we read on here!!!! and you can change your gp ,providing he is willing to accept you as a patient....now there's a thought -----how about gp's in each area SPECIALISING in certain conditions.....or is that a bit too radical ------then we may be able to call it the truly caring profession !!!!!!!!! if we can change gp's depending on a long term condition

[molliemdz in reply to alangardner]

But then they wouldn't be GPs; they'd be specialists! And a register of sympathetic GPs would be great, but there are only about 3 (maybe 4) practices in my area to choose from. If none of them turn out to be thyroid-literate, or even thyroid-sympathetic, I don't have the option of just moving house to get into someone else's practice. I'm horrified at the general level of ignorance amongst medical professionals about this disease! I think a campaign of thyroid education is more in order!

[WaryofMDs in reply to Elaine22]

I hope he does!!!! He might then gain some insight into our desperation???

[Redditch]

I got exactly what you got.. diagnosed with auto-immune in September.. 25 then 50mcg of levothyroxine and although I do feel better.. I'm not better ENOUGH to go back to work full time.. GP said I was "fine" so I changed GP.. New GP said I was "fine" patronising sod.. so I wrote a stroppy letter educating them on basal temperature vitamin D, B12, Ferritin and Cortisol (all gained from guys on this site) and have now got a) another 25mcg of Levo and b) a referral to a consultant endochrinologist recommended by someone else on this site...

Fight 'em girl... YOU know how you feel....

[Redditch]

By the way don't waste your money on private T3 TSH levels they are pointless... all they do is show if the thyroid is talking to the pituitary politely... nothing to do with your symptoms which are to do with whether you are absorbing or using enough thyroxine at a cellular level and short answer is that you're not because you still feel rubbish... so.... you either need...... more levo.. (some people need a bit more).. or.. you need T3 instead of or as well as T4 or you need Natural Desiccated Thyroxine NDT or you need a load of other vitamins and minerals at top optimal levels to feel good... we're all different so the actual readings are all subjective.. you have to go with how you feel.. this is a rough guide but don't get hung up on reaching optimum levels.. go entirely on your symptoms..

• Ferritin close to 90

• B12 of 500

• D of 80

• Folate of upper middle range

• Good cortisol levels

If you aim roughtly for this and ask GP for another 25mcg and you still feel rubbish then it's time to get a referral to an endochrinologist that understands you and will explore the NDT and T3 routes with you in an educated way.

Remember that some 87% of people with "normal" blood results feel just fine.. so it's not surprising that GPs think the rest of us are malingering depressives.. I have loads of literature and can give you the letter I sent to my GP that caved him in to my way of thinking.. we're all here to support you..

[Elaine22 in reply to Redditch]

Thank you so much , blood results should be in tomorrow. And will make my next attempt on the ladder to a better life. Thank you to everyone for giving me the information and support. I'm determined to improve and enjoy my later years. As I have worked so hard to get here and enjoy.