frustration with GP following recent blood results - Thyroid UK

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frustration with GP following recent blood results

hippy66 profile image
13 Replies

Hi all,

I had a blood test done in June,(NHS only as I have felt really well until recently).

Results are: TSH 0.18 mu/l(0.35-5.00)

serum free T4 14pmol/l (9-19)

serum iron level 14umol/l (12-26)

serum transferrin 2.5g/l(1.7-3.8)

serum ferritin 18(22-275)

My current dose of levothyroxine is 100 and 75mcg alternate days.

Spoke to my GP this morning. I'm quite disappointed as she has been supportive in agreeing to my request to tweak levothyroxine until now her concern being my TSH level is in the low range and she is concerned I may become hyperactive. I explained that thyroid UK recommend making sure T4 is in high range inspite of lowering TSH levels. She was having none of it and suggested my symptoms may be connected to low iron levels. I again explained that until recently I have felt really well and my iron and ferritin levels were in my boots! I asked her if levo is not an option,what is.She suggested I keep on with the iron treatment(ferrous fumerate 210mg bd) and repeat bloods for TSH and T4.It is really frustrating when GP's look at blood results and try to write off symptoms as something else! I remember reading a post about some research based recommendations on here but can't remember what it was. I'd be vey grateful if someone could remind me what the article is.

If I go back to my G P armed with knowledge it may make a difference! I have felt really well recently and I'm not prepared to go back to feeling so rubbish for no good reason!

Thank you in advance.

Tracey

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shaws profile image
shawsAdministrator

Doctors aren't happy when patients come into the surgery with advice they've sourced elsewhere. I think it dents their confidence.

You can tell your GP that you are a member of Thyroiduk.org.uk (you can join if you aren't) and have been advised by Thyroiduk.org.uk which is a registered, genuine website and it is also an NHS recommended site. Also it has a forum within Healthunlocked Thyroiduk.org.uk to provide for information and advice for dysfunctions of the thyroid gland to worldwide sufferers. Thyroid UK also have Advisers. medical advisers and Trustees.

Some links:-

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

You can mention to the GP that the TSH is from the pituitary gland and tries to pump out more thyroid hormones by increasing the TSH but once diagnosed with hypo, our TSH has to be 1 or lower. You cannot go hyper if you are hypo unless you seriously overdosed on hormones.

thyroiduk.org.uk/index.html

Marz profile image
Marz

It is possible that with such LOW Ferritin and Iron you will have difficulty converting the T4 into the ACTIVE hormone T3. No results for that - the most important one !

Do you have Hashimotos ? If the FT3 is over range then you may consider being HYPER in the absence of symptoms ....

SlowDragon profile image
SlowDragonAdministrator

Low ferritin with mean you struggle to use Thyroid hormones

It needs to be at least 70

Ask for vitamin D, folate, and B12 to be tested as well

Plus if not ever had thyroid antibodies tested ask that they be done too to check if cause is autoimmune also called Hashimoto's

Hashimoto's affects the gut, low stomach acid can lead to low vitamins and very very often gluten intolerance

hippy66 profile image
hippy66

thank you all for your speedy replies! In response I have hashimotos(previous blood tests sourced privately confirm this). I take 400 mg of selenium daily. I have chronic anaemia and have had cameras in places they have right to be! :-D All come back clear. I have been a vegetarian for 30 years and they put it down to that. I suspect I have very poor absorption as the results shown are with 420 mg of ferrous fumerate daily. I also have pernicious anaemia and am vitamin D deficient and take prescribed Vit D and have B12 injections every 3 months. I tried a gluten free diet but to be honest didn't feel any different when I started to eating it again. I have felt really well for the last 2 months but the symptoms are creeping back.

Thank you for the information on the PULSE article. I will email Louise now. I did tell the GP I am member of Thyroid UK and they are a recognised source of information for the NHS. (that bit was ignored completely and I didn't want to argue the toss without evidence to back me up).

Thank you again for your replies

Tracey

Marz profile image
Marz in reply to hippy66

Maybe take a break from selenium ftom time to time. Too much is not good and 200 is often enough. 😊

humanbean profile image
humanbean in reply to hippy66

I agree with Marz . 400mcg of selenium is a lot, and I would suggest giving it a break for a month or two if you've been taking 400mcg for a long time. When you re-start, take 200mcg per day, or 400mcg 3 times a week.

thyroidpharmacist.com/artic...

Well, your ferrtin is under range which will cause symptoms and also prevent you from using the levo effectively. Did your GP not sugest an iron infusion or a t least an investigation by a specialist to find out why it is so low - you could have internal bleeding. You could still do with an increase in levo, though. Shame you can't get a free t3 test so you can really see what's going on

hippy66 profile image
hippy66 in reply to Angel_of_the_North

I've had investigations and all came back fine. I didn't have private blood test done last time as I felt well but have since started to feel unwell so I will have a full thyroid test done. My conversion rate has been ok in the past and I hoped it would get better still having been in iron for the last 6 months . Thank you for your advice 👍

hippy66 profile image
hippy66 in reply to Angel_of_the_North

I was sent to see the gastrics who said I don't need an infusion( if only they'd refer me to an endo!) and yes I did suggest that but they looked s little puzzled by my suggestion 😳I didnt get a private blood test done in June as I felt really well but I will now to test for FT3 too 👍

Phoenix605 profile image
Phoenix605

Try this piece of research, I successfully used it to stop my GP lowering my dose when I had a TSH of 0.05 (0.2-4.2) and Ft4 right at top of range as my FT3 was only mid range. She also agreed to a raise with a TSH of 0.35 as my FT4 had taken a bit of a nose dive and FT3 had also dropped a tiny bit (I now know my FT3 needs to be a minimum of 4.8 or symptoms flood back!). She had been making grumbling noises about hearts and bones, luckily I have my own FT3 tested and she accepted the results and research. I don't get the ratios in the Dundee piece but the rest is clear enough, including the ranges they found acceptable in terms of risk.

discovery.dundee.ac.uk/port...

The next one is from the NHS on testing for hyperthyroidism, you might want to highlight the following bit:

Your levels will be compared to what's normal for a healthy person. A low level of TSH and high levels of T3 and/or T4 usually means you have an overactive thyroid -,granted they are talking about thyroid rather than replacement hormone but the danger ends of the ranges are the same.

nhs.uk/Conditions/Thyroid-o...

Lastly there is this educational piece from the endocrine society on diagnosing thyrotoxicosis

yourhormones.info/endocrine...

Suggest that as you have hypo symptoms you cannot possibly be hyper especially in the absence of a Suppressed (under 0.03 acording to University of Dundee) TSH and high FT3 and/or FT4 result (according to NHS Choices and Endocrine society). Your TSH is not suppressed, your FT4 is no where near high and she doesn't even have an FT3 result. The hyper concern is usually based on the arguement of heart and bone risk which Dundee address nicely.

Suggest she supplies contrary evidence (yeah, right) from equally reputable sources.......... Failing that, see a different GP, I saw 4 at my practice before finding one that had a clue.

Have fun 😁😁

hippy66 profile image
hippy66 in reply to Phoenix605

Thank you for your advice..It's a great idea to ask the GP for evidence of their decision and one I'll take on board! I will now have a blood test done privately to test for FT3 and antibodies and take it from there 👍I have seen numerous GP's at this practice. This one, until now was very much on board with patients with chronic conditions self managing when appropriate to do so. Thanks again 👍

SlowDragon profile image
SlowDragonAdministrator

How long were you gluten free and did you measure antibodies before changing and subsequently. Even if you felt no different antibodies may have lowered if you tried for reasonable time frame

Do you avoid soya? This can affect thyroid too.

Have you tried increasing stomach acid

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

Have you been tested for H Pylori

thyroidpharmacist.com/artic...

hippy66 profile image
hippy66 in reply to SlowDragon

Hi slow dragon

I didn't test my antibodies tbh. I took L-glutamine for quite a while. Unfortunately the recommended amount for aiding with stomach acid made me sick( I've never managed dissolved powder medications well) so a tablet form of betain and pepsin sounds promising ! I don't completely avoid soya , being a vegetarian makes it slightly more difficult to eat a balanced diet if I avoid it completely, and particularly as my culinary skills and imagination/knowledge are just plain rubbish!following on from the next lot of blood tests I'll endeavour to keep up with the GF diet and note any change in bloods results , I didn't give it much attention previously as I didn't feel any different when avoiding it. Thanks again for your reply

Tracey

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