Advice please- GP wants me to stop levo - Thyroid UK

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Advice please- GP wants me to stop levo

Niklew profile image
19 Replies

Hi all

I was diagnosed as hypo back in October 2017, results :

Tsh 4.83 (0.27-4.2)

T4 12.5 ( 14 - 25)

I started taking levothyroxine 50mg 7 weeks ago and my new bloods show I’m now. In range :

Tsh 0.81

T4 14.9 same ranges as before

I have the same symptoms if not worse : hair loss( allot ), fatigue , but now I have anxiety, feeling low, dizzy

My b12 was 800 and d3 60. Ferritin was 51 back in oct so I started iron myself - GP refused to test again as it was ‘ in range ‘ (15-150).

My GP says I should finish levo as my results now show normal but wouldn’t they rise again? I asked to remain but then could my symptoms be getting worse because of the levo?

She wanted me to start anti- depressants but I’ve just ordered cortisol saliva tests off blue horizon as I feel it’s more adrenal fatigue.. GP said anti- depressants would help with this... any advice?

Thank you all

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Niklew profile image
Niklew
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19 Replies
Marz profile image
Marz

Oh dear another GP who is not sure what they are doing ! I guess she is going by the TSH only. As has been suggested in your other posts/threads - you need FT3 tested as well as thyroid anti-bodies - TPO & Tg. I am assuming Doc thinks you are over-medicated - well without the FT3 result the GP cannot tell. Your FT4 is still very low in range - so the advice is still the same as in other posts - you need an increase in your Levo :-)

Ferritin would be better around 70/75 so keep on supplementing and try VitC - to aid absorption - with each dose. VitD needs supplementing too to bring it up to around 100. So 5000 IU;s during winter and then test again. Also take magnesium and VitK2-MK7 to ensure increased levels of calcium are directed away from the arteries and into bones and teeth.

I would proceed with the Adrenal Testing and avoid the AD's like the plague. GP's receive Funding Points for prescribing them :-(

jimh111 profile image
jimh111

Your October results indicate central hypothyroidism. Consequently you can't have your dose titrated by TSH. It is likely you will need some liothronine (L-T3) as well as levothyroxine. You need fT3 measured as well which a GP can't do and only endocrinologists can initiate liothyronine. Also it's possible though unlikely you have other pituitary hormones that are low. I would ask for an endcrinologist appointment as this is clearly beyond your GP. I would also ask for an increase in your levothyroxine in the meantime as fT4 14.9 is still quite low. Do not accept antidepressants, if your doctor is having problems with your case they should take the antidepressants. Your symptoms do not support a prescription of antidepressants, using antidepressants to get rid of a patient is unethical and dangerous. Adrenal fatigue is a bit of a myth and will distract you from getting to the root of the problem.

Hillwoman profile image
Hillwoman in reply to jimh111

Can you please explain how adrenal fatigue is a myth?

Does my flatlining cortisol and DHEA, both stuck at the bottom of 24 hr graph, mean absolutely nothing?

jimh111 profile image
jimh111 in reply to Hillwoman

Adrenal insufficiency as a result of longstanding severe hypothyroidism is a rare condition, patients are unable to tolerate even small amounts of thyroid hormone. This corrects itself with short term adrenal hormone and gradual titration of thyroid hormone. Good doctors who look after thyroid patents but don't tell every patient they have 'adrenal fatigue' get success rates as good or better than the ones who perceive 'adrenal fatigue'. If the adrenals are underperforming ACTH will be elevated. I don't trust the saliva tests, I tried them over a decade ago, prompted by the 'adrnal fatigue' gang, I got random results.

To be fair on Dr P he at least prescribes very small doses that will do no harm, jsut have a placebo effect. Unfortunately some patients take much higher doses.

Hillwoman profile image
Hillwoman in reply to jimh111

The ACTH is a pretty blunt instrument that will only detect the extremes of adrenal ill-health.

What is your concern about the saliva test?

jimh111 profile image
jimh111 in reply to Hillwoman

My experience is it gives random results. I've been planning to look into this for quite some time. If it's OK I'll hold off for now as I don't have time but I will create a new post within the next few months and make a note to pm when I do so. Sorry for not being helpful at the moment but I think I should gather my notes before commenting more.

Niklew profile image
Niklew

Thank you both for your replies. I argued to have another prescription of levo which she has given for 3 months but it’s at the same dosage of 50mg along with the anti- depressants.

They wouldn’t test FT3 or anti duento me needing levo previously anyway..

I will go back to the doctors next week and speak to another one. And just hope they are better, have seen 3 so far.. I do feel upset allot more and stressed but I have to admit the hairloss I do find really upsetting. That more than the fatigue...

Angel_of_the_North profile image
Angel_of_the_North in reply to Niklew

Do not take the anti-depressants - they will make you worse. See another doctor and ask for an increase in levo.

Niklew profile image
Niklew

Sorry should read antibodies! Not whatever word my phone has put in!

Niklew profile image
Niklew

Should I pay for a T3 test ? My gp says they will not test it..

SlowDragon profile image
SlowDragonAdministrator in reply to Niklew

Absolutely yes get TSH, FT4 and FT3 tested, plus antibodies if still not been tested

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Your GP is clueless to say, your fine now and stop Levo. You are improving because you are on Levo. It's replacement thyroid hormone, not a medication we can start and stop.

Niklew profile image
Niklew

Okay thank you. I have looked on blue horizon and medicchecks and for the in depth thyroid checks ( £99.. :( ) does anyone know how many things you need to fill for the finger prick tests? I think it tests for 11 things. Do they need 11 samples??!

greygoose profile image
greygoose

Your GP is a nutter! Yes, your levels will drop again if you stop taking the levo. As it is, you're under-medicated with that very low FT4, and that's why you still have symptoms. Your FT3 is probably very, very low, and it's low T3 that causes symptoms.

As for the idea that antidepressants will help with adrenal fatigue... I think she needs a change of career because she really isn't very good at being a doctor! Do not accept the antiDs! You cannot replace hormones with antidepressants. Silly woman.

Niklew profile image
Niklew

Your reply grey goose cheered me up some. I came home upset as I went to try and find out where I go in terms of symptoms and ended up with anti depressants. My husband is supportive and although money is tight has said for me to order the test so between the two comes to just under 200.00 but sounds like it’s something that needs doing.

I’ve just made an appointment with a diff GP who my husband finds good for the 5th Feb so I will hopefully have done the other tests by then to take with me. I’m going to order the thyroid one today and the cortisol one was dispatched today.

Thank you for all your help. Would be lost without your help

Why would you stop it? You are hypo and still have free t4 that is too low on levo. You actually need an increase of 25mcg, as the aim of treatment is to cure symptoms which is usually achieved when free T4 is in the top quarter of the range (over 22) and TSH under 1 - free t3 should also be in the top quarter of the range but NHS rarely test it. You might want to show your doctor a copy of the Dr Toft pulse article that explains this. Your GP needs retraining.

Chunipet profile image
Chunipet

I would agree with everyone else here - don’t take the antidepressants. You’re feeling down because you have a thyroid condition which causes low mood. Antidepressants won’t fix it. Accept that this is going to take some time to get sorted and that once treated it takes time to start to feel better.

The blood tests are easy to do yourself. Everything you need is supplied, there are clear instructions and usually only one small vial to fill.

i dont go in for Dr-bashing as a rule but when I read something like this it makes my blood boil. Your Dr is dangerous and a formal cmplaint needs to be made against him for the safety of every patient with whom he comes into contact. If you lost a leg in an accident and were given a prosthetic, then walked around his office demonstrating how, despite a little wobble here and there, you were now walking fine, would he tell you that you're now back to normal, no longer need your replacement limb and take it away from you? No of course not; and it's the same with being hypothyroid - you're only fine with substitute thyroid hormones making up the dearth, whilst you take them. Take them away and you'll fall over splat!

janveron1 profile image
janveron1

Anti depressants would certainly help GP's budget! They get money for this but nothing for Levo etc.

Does he/she think you are cured by one dose? Please ask!!!

Niklew profile image
Niklew

Thank you everyone - I haven’t taken the anti- depressants. I’ve just finished doing the thyroid plus 10 check and done the cortisol saliva one yesterday and will see what happens when they come back. I have to admit I found the finger prick one difficult - followed instructions but took me hours to fill the tube- just sat there at the table! Thank you everyone for you help

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