Thyroid UK

Told to STOP Levothyroxine

Sorry me again I’m at my wits end!! I posted previously stating My results and got great advice the results were:

Serum free triiodothyronine level 6.5 pmol/L [3.1 - 6.8]

Coded entrySerum free T4 level 26.9 pmol/L [12 - 22]

Coded entrySerum TSH level 0.05 miu/L [0.3 - 5]

Thyroid autoantibody level 938 iu/mL [< 100]

I’ve had my meeting with my Doctor who suggested to totally Stop Levothyroxine and go back next month for a blood test. No reason or explanation why. I’ve also had an awful sore throat for 6 months like someone is strangling me and she had a feel of my neck and didn’t say anything else. I questioned her and also suggested a scan and to see a specialist which she has agreed to refer me to but I’m worried about Jusy stopping Levothyroxine. She says because My original results from my first test was only slightly over range TAH 6.8 I think it was she didn’t think I should of even been put on medication.

🙄 Can I Just Stop medication like that?

14 Replies
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MillieMuffin,

You are overmedicated to have FT4 26.9 and TSH so suppressed but GP should reduce dose rather than stop taking it altogether especially as thyroid antibodies are high.

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Did you leave a gap of 24 hours between your last dose and the test? Did you take your dose after the test?

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You have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Highly likely to have low vitamin levels.

Ask GP to test vitamin D, folate, ferritin and B12

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

Is this how you did the test?

Your results suggest possibly very slightly over medicated, but it could be a Hashimoto's flare where suddenly get dumped thyroid hormones causing temporary hyper levels

You might need to drop dose slightly

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

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Your doctor is - well, let’s be polite. Underinformed, how about that? You have Hashimoto’s, so eventually your thyroid will fail. It’s already failing, hence your slowly rising TSH without hormone replacement. And you want a baby.

Ditch this doctor as fast as you can, see another one. A small reduction in dose might be warranted, but not stopping levo altogether. Stopping altogether will just set you back months.

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Thank you, I really don't want to stop the medication as in my opinion I am then Just straight back to square one of what lead me to go on Medication anyway. I am on 50mg do you think I could cut them in half to half the dose would that work?

This Doctor leaves me feel anxious and upset every time. I had high hopes when I went in today I am very much a plan of action kind of person so to go in and literally but told to Just stop and see what happens seems strange and a waste of time! So then what in the month I go back and she is like OH your TSH has risen let's try you on a lower dose. Just makes no sense! I am thinking of registering with a surgery closer to home and see if they can help it's sad because if it was not for support groups like this I would totally 100% trust my Doctors decisions and probably end up worse off. I do have a question though... they have said they will refer me to a endocrinologist would this be effected if I changed Doctor surgery now?

I Just need someone out right to tell me what I should do or need to do. My Vitamin D level is also Borderline it's basically the lowest it can be for them to consider it "OK" I asked if we could look into that as read Vitamin D can help but they said NO there is no evidence it could help and everyone in this country has low levels. I am honestly so confused and depressed about this whole situation. I only got the referral because I quoted someone from here with the NICE Guidelines which clearly stated I should be seeing a specialist if I wanted to get pregnant, I am so terrified if I did happen to get pregnant I would miscarry due to negligence until the doctor finally made the connection with my Thyroid.

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That would work if you're only taking 50 mcg. But reductions should only be maximum 25 mcg every six weeks.

This doctor is dangerous. She has no idea what she's doing. You really should change doctors and make a complaint about this one!

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Thank you greygoose. She has been pretty bad for a while this is Just one other thing to make me wanna go elsewhere after doing so much research myself I had high hopes for seeing her today. Instead I left upset, angry and more confused! I am only on 50 I assumed she might of wanted to try me on 25. Thank you so much everyone for replying.

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I wouldn't go back to her, if I were you!

Have you had other tests done whilst on 50 mcg levo? If so, do you have the results? Were they reasonable? Because, you have Hashi's, so your high results might not be anything to do with your dose. They could be due to an immune system attack on your thyroid. In which case, they will go down again, and you will be hypo again. Endos just cannot get their heads round the fact that that's how Hashi's works.

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April 2016 the Tests She Done were:

TSH level 5.98 miu/L [0.3 - 5]

free T4 level 15.8 pmol/L [12 - 22]

She did not want to give me medication at this point due to being "borderline". then tested them again in March 2017 to see if any change and the results were:

free T4 level 18.4 pmol/L [12 - 22]

TSH level 6.61 miu/L [0.3 - 5]

Thyroid autoantibody level 77 iu/mL [< 100]

At this point I was put on 50mg Levothyroxine.

She only tested TSH which was in June 2017 it was Serum TSH level 3.37 miu/L [0.3 - 5] Then my recent blood test which is the one I have shown above.

Will I ever be likely to find anyone that understands this and will be able to help and explain what is going on?

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OK, so there's your proof. Your TSH is not going to jump from 3.37 in June, to 0.05, without any change in dose, unless something else is going on. And, that something else is Hashi's.

Hashi's is an autoimmune disease, where your immune system mistakenly takes your thyroid for the enemy, and tried to destroy it.

From time to time, the immune system will launch an attack on the thyroid, and destroy a few cells. It's just after these attacks that the antibodies are highest, because they come in to clean up the mess, so to speak.

After the attack, the damaged and dying cells leak all their stored hormone into the blood stream, causing levels of FT4 and FT3 to rise, which causes the TSH to drop.

These high levels are only temporary, and when the extra hormone has been used up, or excreted, the levels of the FT4 and FT3 will go down again, and the TSH will rise, and you will be hypo again.

This is what we call a Hashi's 'hyper' swing - aka Hashi's flare. It has nothing to do with your dose, and nothing to do with your TSH on diagnosis.

It is utterly amazing that doctors/endos know nothing about all this; but we see it time and time again on here. Time and time again, they tell patients to stop taking levo, thinking that they are either cured, or they didn't need it in the first place! But, neither is true. You most certainly will need the 50 again, once your levels go down. So, as soon as you start feeling hypo again, go and see your doctor, and explain what has happened. Tell him you want your full dose restored. :)

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Thank you!!!! This makes so much more sense to me so well explained!

You can tell by my Doctors action she thinks she caused this and caused my Thyroid to do this and attack itself by giving me the medication!She thinks stopping it will let it relax she even said a Thyroid is an important thing to have we don’t want to go upsetting it!!

Your post has more sense and helpful than 2 years of seeing this Doctor! I assumed I got High Antibodies randomly and all they would do from now is get higher and higher until I’m to ill to function! The funny thing is I checked my online patient record and the only blood test she’s requeated to retest is TSH levels 😂😂😂

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Well, they're taught in med school that the TSH tells them all they need to know! But, as you can see from your own results, it actually tells them very little.

But, no, in no way has she caused this problem by giving you levo. You already had the high antibodies long before you ever saw her. It takes a long time for the disease to get to the point where you feel the need to consult a doctor. So, she should get that idea right out of her head, and start treating you properly! :)

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The standard of GPs’ thyroid knowledge is pretty poor generally imo. Definitely see another doctor! I changed practices. My previous GP eventually tested my thyroid after 2 years of going with a plethora of symptoms. After a year on 25mcg levo, I still felt very hypo but he didn’t want to raise my dose and wouldn’t refer me to an endo. “There was no clinical need.” That’s because my TSH was something like 3. I paid to go privately and the endo virtually took one look at me and said I needed to double it, and probably would eventually need 75-100mcg. He told me most patients feel better at under 2 or even under 1 TSH. He then said I needed to see him on the NHS. I went back to the GP and he just shrugged. I changed practices after that and the doctors seem a bit more clued up. So I hope you can find a good doctor and if not, it might be worth going privately for one consultation with an endo. I couldn’t really afford it, but it was the best thing I ever did. I really hope you feel better soon!

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Thank you all so much for taking the time to message, It has really helped me I was such a state yesterday but I have decided to try and take half the dose myself (as really not keen on the stopping all together idea) and have registered with a new Doctor hoping they can be more help. I feel so exhausted lately and have to even nap in the day which is unlike me and my anxiety and depression has become worse. I try to battle on and with the help of this group I feel less alone. Thank you again!

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