Please can anyone help? Doctor won't increase thyroxine, my TSH is 4.2 and I feel so ill, fat, bloated, cold, depressed. She suggests HRT?

[Cara20007]

Still not heard from my doctor from 5 days ago although she promised to phone me within two days. She gave me some reading material on HRT and said she wasn't happy about increasing my thyroxine ( I take 50mcg and the test result showed TSH of 4.2 ) but she would check new guidelines for my weight? She suggested HRT (or counselling as I got upset!) instead of thyroxine increase but I am now 61 and went through the menopause 12 years ago so find it strange that she would suggest this? However I really want to feel better so does anyone have any opinion on this? I still haven't received the thyroid blood test print out I asked for

[HarryE]

That TSH level would be considered overtly hypo in many other countries, so on medication it is totally unacceptable. You may have to be pushy, but she needs to , at the very very least, let you try a higher dose tomsee how you feel. Chase up your surgery, you need to show them you mean business.

[Cara20007]

Thank you both so much for that. I really don't think HRT is a choice as I've read that people are actually trying to come off it.

I felt even more depressed with the fact she never even got back to me like she said she would.

Does anyone know where I could get a private blood test done that would show Free t4 Free T3 B12 Ferritin

Folate as recommended as my doctor certainly isn't going to order those tests.

[HarryE in reply to Cara20007]

If you go to the main ThyroidUK page, down the left hand side there is a link to testing. Genova and Blue Horizon are both used by lots of people here and give a discount too.

I'm sorry to say that you must get tougher with her, I know it's uncomfortable and difficult when you feel unwell, but she is there to do her job, not patronise you. Get some research together demonstrating that your TSH needs to be lower and go back.

[galathea in reply to Cara20007]

Private blood tests cost around £100 for the full thyroid panel. Details of testing on the left hand side of the. Thyroid uk website.

thyroiduk.org.uk/tuk/

[galathea]

Point out to her that leaving you with a tsh of more than 4 is increasing your risk of heart problems.... according to the society for endocrinology...... Paragraph 4. endocrinology.org/press/pre...

And all get a copy of dr tofts book... Understanding thyroid.. Its less than a £5 from the chemist or amazon. He is a well respected endo with a good pedigree and he. Says tsh should be lower . Then challenge the doc again. Xx

[Hidden]

Hi there Cara... Your TSH is about the same as mine was a year ago when I first joined Thyroid UK.I had been on 50 mcgs levothyroxine for over 10 years and was feeling awful but with my GP repeatedly telling me there was nothing wrong with my thyroid including on one visit " What do I have to say to reassure you there is nothing wrong with your thyroid? ...we have to look for something else."....a full blood count followed and when I called the surgery for results was told it was all normal and he hadn't asked to see me.! Years before all this I was on HRT for 7 years with no benefit and had to be taken off it before being prescribed Levo,which is what I believed I had been needing all along since my fifties. ..... Sorry to unravel part of my own story,but you seem to be going down a similar path and not getting much help either.

I would advise you to persist in getting the print out of your blood test and then posting it here and there will be lots of advice and support offered to you.

It was only after joining TUK and getting lots of information that I was able to go back to my GP and get him to see my point.He is now much more supportive ,but eventually had to agree to book me to see an endocrinologist,who thankfully is now helping me.

I only wish all this had been done for me 20 years ago ( I'm 73) so,I hope you can make things happen a lot sooner.You may well be advised to get more blood tests ....vitamins etc.and highly likely a rise in your levothyroxine. Good luck and I hope you feel better soon.

[Hidden]

I go from sad, to angry, to horrified when I read posts like yours. {{{hugs}}} Stay here for a while and you'll see that you're far from alone. It beggars belief that our doctors - our first world, supposedly highly educated doctors - are so misinformed about what constitutes the treatment of thyroid problems. They don't seem to understand how the feedback loop for thyroid function works at all. On medication, a TSH of above 1.0 is likely to indicate that a patient is undermedicated, especially if FT4 and FT3 are also low. You shouldn't have to go down the route of private blood testing, but if you do, then Blue Horizon are reliable.

[Cara20007]

Thankyou all for your help! It's good to hear other stories too so thankyou for sharing. I've got an appointment later today as I phoned the surgery this morning to ask if the doctor had left me a message which she hadn't! I will ask for a print out but I only had TSH done so it will only show 4.2 I will look into private but they're so expensive!

[Hidden]

I'm absolutely with reallyfedup and Harry here, it's making my blood boil and my swearing go through the roof ! My TSH is a minus figure, and whilst that's probably excessive (although I'll never concede that point when my GP suggests lowering my T3/4) I need to be at that level. I'd feel my body was coming to a full stop if it was at 4.2 as indeed I did feel before T3 was added to my T4. Phone or go to the receptionist and insist she dictates your levels and ranges to you if printing it out is too difficult, or that she prints it out whilst you stand there and wait. Explain it is legally your right to be given this information and that if you aren't given it there and then you will make a formal complaint and also refer the matter to your MP. As your GP has not provided the information within the 2 days make another appointment and go armed with all the information you need to put your case. You only need counselling to address the frustration of being at the mercy of incompetent professionals, not to feel better in the absence of adequate medication levels. Just as a guide to you, but remember we are all different, I take 125 levothyroxine plus 20 liothyronine, and there are many of us on higher doses, so whilst lower doses can thankfully work for some people if you remain symptomatic of an under treated thyroid condition there is no danger in having your meds increased.

Ultimately many of us take to the web and buy our own meds in desperation and frustration. Good luck

[Hidden]

Don't worry that the printout will only show your 4.2 TSH.....the range used which will be in brackets is also important and this paper will be the start of your records which you can refer to as you make your journey to recovery.I can assure you that you will grow stronger as you learn more from this support group and you will ( like all your friends here) learn how to approach things and get yourself the improved health that you deserve........I have learned to be assertive in order to build up my file ( which thankfully hasn't needed me to be aggressive in attitude ) We all need a GP but unfortunately Thyroid problems didn't seem to be high on the list at Med School and therefore many doctors don't seem well informed.....enter the hopefully better informed Endo. If you do get referred at some stage,a tip is to approach Louise Warville who has a list of recommended Endos and hopefully there may be one in your area.If there isn't one you can always ask here if any member can recommend one by private message.

It is so much better to be able to work with your doctor to find the help you need.X

[Hidden]

I was desperately ill when my tsh was that level. You need to get away from this dangerous GP asap. Some drink from the fountain of knowledge, but most only gargle - like your and my NHS GPs

Self medicate with ndt if need be - my personal view only. There really is no time to waste as it takes quite a while to become reasonably well after your thyroid has been mismanaged like that -i speak from personal experience.

Love the way she wants to give you HRT, so it's fine to put you at risk of cancer but taboo to treat your thyroid efficiently; there are so many risks associated with being hypo.

I am so wound up about your situation, only because i have been there and was told i was depressed. These GPs are enough to depress anyone.

[shaws Administrator]

I think it verges on criminal to deny a person with hypothyroidism an increase. She obviously doesn't know best how to treat thyroid gland problems. If you read all the questions on the following link, they are informative, but especially the one for you is dated November 28, 2003.

web.archive.org/web/2010103...

There are other useful topics at the top of the page of the above link. We have to read and learn as much as possible about our own condition and how best to try to recover our health..

Email [e-mail] for a copy of Dr Toft's Pulse Online article wherein he states the aim is a TSH towards the lower part of the reference range – 0.2-0.5mU/l:. I would give your GP the whole article highlighting question 6.

Question 6 is:-

What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

[Cara20007]

Thank you so much for your help on here. I've emailed thyroid uk.

My doctor has finally agreed to increase my dosage! Yay! After saying no again yesterday I asked her about calculating it by my weight so she now says I should be on 132! My levothyroxine has been increased to 75 as it can't be done quickly. Does anyone know what effect taking an extra medicine like T3 would have as I have noticed on some questions that this is mentioned?

[HarryE in reply to Cara20007]

Great Cara, well done you! xx

I would think about T3 after you have got up to the recommended dose you mentioned. It might help you, but upping your Levo dose might be enough. Baby steps

[humanbean]

Something you could print out for your doctor to see...

web.archive.org/web/2005020...

eje.org/content/143/5/639.f...

The first link shows the graph of TSH distribution in a healthy population in Norway. The highest point in that graph (i.e. the commonest value of TSH that healthy people have) is with a TSH of 1.25. The 97.5 percentile point is at a TSH of 3.6 i.e. 97.5% of healthy people have a TSH lower than 3.6.

The second link is a link to the research paper the graph is based on.

Hope this is of interest.

[Cara20007]

Great replies thank you so much!

[Cara20007]

Test results print out received! I have now had this from my doctor so apologise for the long list:

may 2014 TSH 4.2 (0.3-5.5)

April 2014 TSH 4.1 (0.3-5.5)

May 2012 TSH 3.8 (0.3-5.5)

Oct 2011 TSH 4.3 (0.3-5.5)

Aug 2011 TSH 3.8 (0.3-5.5)

April 2011 TSH 4.7 (0.3-5.5)

May 2010 TSH 5.1 (0.3-5.5)

Nov 2009 TSH 3.9 (0.3-5.5)

Jul 2009 TSH 4.6 (0.3-5.5)

April 2009 TSH 5.7 (0.3-5.5)

Jan 2009 TSH 5.9 (0.3-5.5)

Jun 2008 TSH 4.3 (0.3-5.5)

Feb 2008 TSH 7.8 (0.3-5.5)

Nov 2007 TSH 7.1 (0.3-5.5)

Jan 2006 TSH 5.5 (0.4-6.3)

This may explain the 13kg weight gain over the past few years. I am now on 75mg Levothyroxine but am going to get my bloods done privately. I am getting TSH Free T4 and Free T3 done. I'm not sure whether to get B12 done too? If anyone could advise me that would be great?

Thank you!

[HarryE in reply to Cara20007]

Good grief Cara, these results are all higher than mine was when I was really ill and untreated, so on medication they are truly terrible! You need more levo, can you get to see your doctor again with some evidence to prove that?

As for B12, have you been supplementing it already? If so, I don't think testing is accurate, but if not then yes, I would get it tested. How is your iron level?

[Cara20007]

Hi HarryE thanks for your reply. No I don't take any supplements at all just the levothyroxine and Fenofibrate for high blood fats. As I'm going all the way to London to get my blood done for Thyroids ( TSH FT4 and FT3) then I was wondering if I should get Active B12 tested purely on peoples replies but it does cost £90 or there's Ferritin, Folate and B12 for £123.95. Just gets a bit expensive with the travel as well but if it gets answers then it's worth it? I was only put on 25mg initially and it was increased to 50mg in 2010. I have been on 75mg for the past couple of weeks but it makes me wonder if the initial 25mg suppressed any T4 I made myself!!

[HarryE in reply to Cara20007]

I know just how you feel - I have spent a fortune sorting myself out! It makes me so cross. But if you haven't had them done before, then I think you need all 3 to give you a baseline to work from. Even a 75 dose of levo is still pretty low, and yes the initial 25 probably did more harm than good.

[Cara20007 in reply to HarryE]

Thank you for your advice! I will hopefully post the results for some more help!

[Cara20007]

Something else to worry about! Ferritin!

I've now had my blood test results and for the first time my TSH has come down. I'm still feeling rubbish but the results are:

TSH 1.44 mIU/L (0.27-4.2)

Free T4 17.9 pmol/l (12.0-22.0)

Free T3 4.8 pmol/L (3.1-6.8)

I also had Active B12 bundle which is the worry:

Active B12 85 pmol/L (25.1-165.0)

Folate (serum) 10.8 og/L (4.6-18.7)

Ferritin 250 ug/L (13-150) which is the worry!

I had this done after reading the suggestions on here so am worried about what this means if anyone can help?

Thank you!