Please help. Been trying to get help for suspec... - Thyroid UK

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Please help. Been trying to get help for suspected thyroid probs for approx 2yrs through GP. Blood results erratic for a while.

jangus profile image

Most recent blood tests have TSH: 6.09; Free thyroxine : 15. I also have Rheumatoid Arthritis since 2006. Feel i have classic symptoms of Hypothyroid eg: Hair falling out in clumps, itchy dry skin, palpatations, shallow breathing, terrible mood swings which distress me, toenails very thin and practically fall off, tingling in hands and fingers, aches and painS which are not related to my RA and feel cold all the time. Feel like im banging my head against a brick wall with GP,s (ive went round them all in my surgery) but made to feel like its all in my head. GP referred me to endo last year and she told me that unless (something)...never really explained what...falls below 10 then i would not be treated. so confused and feeling terrible and have been overwhelmed with suicidal thoughts which i have never experienced in my life. Been fed anti-depressants and fobbed-off so many times. Kind regards for any advice.

24 Replies

Your GP practice obviously sticks rigidly to the NHS rules on Thyroid. I believe it is if TSH goes over 10 they will treat you. Many practices will do something before that happens and I wonder whether it is worth asking on this site if anyone knows a practice near you with more tolerance. Which part of the country are you? Knowing this may encourage people to recommend. Otherwise you could search on Thyroid UK for info to take with you to show the least difficult doctor. There are many studies indicating that TSH is not a good marker for either diagnosis or levels of medication. Someone may post something here but I am afraid I am not familiar with any. I have had thyroidectomy and the one advantage is that they cannot argue that I need medication!

Do hope you get help soon.

shaws profile image
shawsAdministrator

Some doctors do treat according to clinical symptoms if your TSH is heading upwards (as yours is). Dr Skinner was horrified as is Dr Peatfield that patients are allowed to suffer unnecessarily in most cases due to this rigorous adherence to not treat till TSH reaches 10. If we were in the USA they treat at 2.7 as 3 is their cut-off point.

I note you have RA too which complicatesmatters but like my daughter (also RA) her GP said it wasn't hypo symptoms. Luckily she saw Dr Skinner (RIP) and her husband said it was the best money he spent as Dr S diagnosed her and prescribed levo and within a few days those pains had gone.

I don't know if you can afford a private consultation but maybe your GP will refer you again to an Endo. If you email louise.warvill@thyroiduk.org she has a list of NHS Endos/private doctors who are more sympathetic.

Hypothyroidism and Depression go hand-in-hand Has your GP tested for thyroid antibodies.

jangus profile image
jangus in reply to shaws

Hi Shaws. Thanks for reply. No GP has not tested for thyroid antibodies. Like i say, GP practice keep fobbing me off whilst sticking to these guidelines. So draining fighting them all the time !! I know my body and know something is not right. I always get copy of my blood tests as i have RA i get regular full blood counts taken. Where the TSH has 6.09value...the "range" quoted is 0.5 - 3.9 so clearly my TSH is higher and it also highlights in the "normality notes" column as HIGH ! I am so stressed trying to get this sorted with GP but feel like they just think im exagerating. I will ask to be referred back to Endo and i will email louise warville. Thank you for your help : )

shaws profile image
shawsAdministrator

Always get copies of your blood tests (we are entitled) for your own records. Make sure they have the ranges as labs differ throughout the country. You can also post them if you have queries. If your GP hasn't done a vitamin B12, Vit D, iron, ferritin and folate, ask for these to be done. The first two are quite often deficient.

If you have time to look at this doctors whole series of 5-min. videos, I think you would understand more about hashimoto and autoimmune disease. This #1 but the rest are on youtube under his name.

youtube.com/watch?v=nZ_CP7l...

jangus profile image
jangus in reply to Heloise

Thank you heloise this has been so informative. Difficulty i can foresee is my GP having a fit at my request to have all these tests done. Probably won,t think i am worth the time or money for them.

Heloise profile image
Heloise in reply to jangus

I know and I am so sorry. The medical system you have is rather pathetic. I'm going to send you a private message. There will be a "1" next to your name meaning one message at the very top of page. Just click on it.

jangus profile image
jangus in reply to Heloise

Cant find your private message heloise? where did you send it ?

Heloise profile image
Heloise in reply to jangus

Hmmm, have you ever opened a private message before? There should be a "1" at the top where your name is located.

Marz profile image
Marz in reply to jangus

I agree with Suze. You already have one Auto-immune illness with the RA. They often go hand in hand so it would be VERY reasonable to expect a test for Auto-immune Thyroid issues - Hashimotos.

I have Hashimotos and Crohns - the latter being diagnosed 40 years ago and the thyroid 8 years ago. Do not let that happen to you - the time lapse damaged my body quite significantly. Wish I had known earlier about the thyroid.

It is important to address gut issues with auto-immune illness - and going gluten free can have a big impact. Expect you know all this - thought it worth mentioning.

jangus profile image
jangus in reply to Marz

Thank you for your help Marz. Im finding all these different pieces of info very overwhelming and worried. My GP enthusiastically advises me not to worry about my thyroid as its "only a hormone" but others here frighten me, especially Hashimotos as i discussed this with GP late last year and he said no,no,no,no you dont have Hashimotos. Struggling with all this and feel like there is nowhere for me to go.

Blake profile image
Blake in reply to jangus

Please see my post below. Fire your doctor immediately, find one who prescribes NDT and understands the thyroid adrenal CONNECTION. And in the mean time immerse yourself in the Stop The Thyroid Madness (STTM) site. It will take you weeks, but if you ever want to be well, you have no choice. Thank you

jangus profile image
jangus in reply to Marz

I have also been gluten/wheat and dairy free for approx 1yr and yes definately helps with RA but cant say it is having any positive impact on thyroid probs as i still feel crap emotionally.

I had to wait until my level was above 10, by which time I was becoming disabled and my job was on the line. If I had known anything about hypothyroidism I could have been more proactive about getting help. You're already way ahead by being here and by having some knowledge.

3 years ago, if I known what I now know, this is what I would do;

Have any blood taken in the morning as your TSH changes through the day. You can be hypothyroid in the morning and 'normal/subclinical' by the afternoon.

Check here, scroll down for 'whom to treat', as this paper from the bmj clearly shows that anyone with a TSH level above 5, plus symptoms should be offered a trial of T4 levothyroxine; bmj.com/content/337/bmj.a80...

I'd print off the paper, highlight the section and send into my GP surgery, with a covering letter, describing my symptoms, listing results of tests and requesting help, then make another appointment. Making enquiries about formal complaints proceedures also helps in being listened to.

Good luck

Liza

jangus profile image
jangus in reply to

Hi LizaSahara. I dont have a printer. My next blood tests are on 10th January and is at 9.40am so your advice about timescale for tests is reassuring that i have done this correctly. Kind regards : )

Thyroid antibodies need to be tested, you have another autoimmune disease so surely they would suspect!!!

I feel for you, I battled for a year to be diagnosed, I now know that not being treated is a risk to harming your health. I also believe that it takes longer to get your body in sync again the longer you go un diagnosed!

Please keep us posted.

Sue

thyroiduk.org

jangus profile image
jangus in reply to Chippysue

Hi Suze thank you very kindly for your reply. I think i ought to mention that my GP did offer me Levothyroxine last year but got freaked out at feeling overly stimulated with them during first week and when i explained this to GP he said ...well we will stop the treatment and never said anything else. Since seeing the endo in the middle of last year....whom is the person who advised me that there was no need to treat until my Free Thyroxine fell to below 10 and since then i have been living life like a hermit. Besides all the symptoms i described previously I have no motivation, doing light housework leaves me exhausted after 10mins and i have brain fog. Have stopeed seeing friends because i feel i have completely lost my mojo. I will ask GP to be tested for Thyroid antibodies although I can see him having a fit already and dont hold out much hope that this will be done. Such a battle and terrified of damaging my health beyond repair. Kind regards and i welcome any further advice/comments : )

Marz profile image
Marz in reply to jangus

....excuse me but how can your GP say you do not have Hashimotos if he has not tested for the Anti-TPO. Words fail me. It's a bit like saying we don't have MRSA in Greece - because they do not routinely test for it :-)....

Is there a chance you could have your tests done privately - and then your GP will have to accept the results as they use the same labs. Money well spent.

I would like to mention that I too felt awful on T4 in the beginning and on the advice of the Greek Endocrinologist I stopped for a couple of weeks and then re-introduced it at a lower dose. This was in 2006. I then moved onto a T4/T3 combination for a year as I was not converting the T4 into T3. I am now T3 only and feel so much better. The most T3 receptors are in the brain and the second highest amount in the gut lining - so for me the combination on D3 and T3 has helped improved my gut. OK the Crohns lesions are still there as revealed in a recent colonoscopy but no symptoms and I feel good.

Your VitD level is sufficient but it may help to dose yourself - especially as its winter.

Good Luck - and do not panic. Make a list of things To Do and take it step by step.....there are so many good people here on this forum that will help you when needed.....

jangus profile image
jangus in reply to Chippysue

I also had VitD test(25-hydroxycholecalciferol) which had value of 57.0 nmol/L with the normal range given as between 25-170 so as far as i can see from this i would presume that 57.0 is falling in the lower range. Can anyone advise me on this ?

helvella profile image
helvellaAdministrator in reply to jangus

You might find the booklet linked from this post of interest:

healthunlocked.com/thyroidu...

Rod

Hi reallyfedup123 thanks for advice. Yes, when i look back to my first blood results in August 2008 my TSH then was 2.74 and freeT4 was 19 so I can see how things have deteriorated since then and this time frame would coincide with rapid depression during that period and my hair just started falling out over past 2yrs. Used to wear my hair in stick up mohican because it was so thick it stuck up....now i have such thin hair it just flops. Feel my GP will have a fit if i dare ask him to test me for all the things you mention but i will ask anyway. Kind regards #asfedupasyouare

jangus please try taking b12 supplement after 2 months of taking 500ug 2 a day you should see a difference it has helped me so much a book to look at could it be b12 ?also ask to have vitamin d3 checked and your b12 if your b12 is below 500 treat yourself dont wait till it gets below what the docs say or you will suffer good luck and take care

jangus profile image
jangus in reply to suki65

Hi suki65. Thank you I will try taking the vitB12 and hopefully i will see the dif you speak of and will ask GP to test for VitD3 and VitB12.

First and foremost, you need to learn about natural dessicated thyroid. Then you need to fire your doctor and find one that understands the stuff. Make sure your adrenals are working properly by taking the 24 hour saliva cortisol test. You will have to order that and do it on your own stopthethyroidmadness.com/n...

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