Thyroid UK
87,465 members102,170 posts

Too much Thyroid Medicine???

Hi everyone, I was on 37.5mcg of Levoxyl and my tsh level was 8.81, which I know is too high, my doctor suggested I go on 50mcg of Levoxyl, but I got on this web-site and was told that may be too conservative. Low and behold I decided to take the 75mcg of Levothyroxine I had and my TSH level came down to 1.9. During that time of taking the 75mcg, I felt better but started to feel short of breath, heart palpatations and dizzy, anxious. I talked to my doctor yesterday and she said my level was perfect and wants to keep me on the 75mcg, but suggested I take half a pill on Sunday. She said this will only bring it down a little. I'm not sure what to do. I don't want to feel these symptoms. Can anyone help me?? Thank you

17 Replies
oldestnewest

Your previous post shows you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

You need to know FT3 and FT4. Just TSH is inadequate to know your levels

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Private tests are available

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 ideally 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. (Patient to patient tip, GP will be unaware)

Low vitamin levels are extremely common. Your vitamin D was low two months ago. How much are you supplementing and have you retested?

Vitamindtest.org.uk £28 postal kit

No B12 or folate tests yet?

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels can affect Thyroid hormone working

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

Ideally ask GP for coeliac blood test first and to test vitamin B12 and folate

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Reply

Thanks for the info. I know I have Hashimotos, I was tested for the Epstein Barr Virus and it was off the charts. I do not have celiac disease and I do not eat gluten or dairy. My iron levels are normal, I have not had my b12 levels checked since the end of last year. My doctor who is the assistant Professor for the section of endocrine only checks my tsh and t4 levels, she tells me there is no need to check t3 or the other levels since I have Hashimotos disease, I have no idea why. My insurance deductable is very high, so I can not test for food intolerences and vitamin deficiency. But I appreciate your help. I am sure I may have a leaky gut.

Reply

The following phrase of your Asst Professor shows how uneducated they really are:-

"My doctor who is the assistant Professor for the section of endocrine only checks my tsh and t4 levels, she tells me there is no need to check t3 or the other levels since I have Hashimotos disease, I have no idea why".

That's the reason why so many who have hashi's or hypo cannot recover their health.

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

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

Maybe she needs a copy of the following two links.

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

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

The fact that she is concentratingh upon the TSH result and ignoring your clinical symptoms is a mistake but she's unaware that it is, as they've been directed that TSH alone informs them of sufficient dose.

If you think you may be having a reaction to the fillers/binders in the levo ask Pharmacist if he has another make but first take an anti-histamine tablet 1 hour before taking levothyroxine and if you feel better it is the levo you are taking that may be affecting you.

All of your vitamins/minerals have to be optimum so GP should test B12, Vit D, iron, ferritin and folate.

1 like
Reply

Thank you for all your help!

1 like
Reply

You should have your iron (ferritin) levels checked as anaemia is common in hypothroidism and can cause the symptoms you describe.

1 like
Reply

Thanks for your reply, I do not have anemia, my iron levels are fine

1 like
Reply

I should have told you I have been on Levothyroxine 75mcg for at least 6 or 7 weeks now, is it possible to have shortness of breath and some palpitations off and on for this long?

Reply

It may be that you raised your dose a little too quickly, and needed an intermediate step to allow your body to get used to it.

You could try alternating your dose for a while - take 50mcg one day then 75mcg the next. Obviously this would raise your TSH and I would suggest you consider reducing your dose as a private experiment, not as a permanent thing. Don't tell your doctor though - because then you will get your prescription reduced which would reduce your flexibility to help yourself and experiment.

Like SlowDragon and jimh111 I would suggest you look into getting nutrient levels tested. When they are too low it makes thyroid meds harder to tolerate.

3 likes
Reply

When my doctor tried to bring my tsh level down she first prescribed 50mcg, but when I got on this web-site they said 50mcg was to conservative, so I had a script at my house that was 75mcg, I took that one and when my blood results came back in March my doc said my tsh was great it came down to 1.92.. my t4 was 1.32 she said they are in normal range. She did not know I took the 75mcg.. so I am thinking it may have been too much too soon. She suggests to take the 75mcg for six days and then on Sunday take half of the 75mcg, not sure why, she said it would raise my tsh some?? My doctor does not test t3, she says its not necessary

Reply

Lowering your thyroid meds will raise your TSH, but I don't think this is desirable or necessary in the long term. A TSH of 1.9 cannot be described as too low even by a paranoid doctor, I wouldn't have thought - although doctors often surprise me. :O

I was suggesting that you might get rid of your palpitations and other symptoms if you reduced your dose temporarily (which will increase your TSH temporarily), get used to the reduced dose, and if your symptoms disappeared then raise it back to 75mcg again and see how you cope.

I would definitely recommend you find out about your nutrient levels, because if they are low then that can cause palpitations, and can make it difficult to raise dose of thyroid meds high enough to make people feel well.

Another issue is that your conversion from T4 to T3 might be poor. That could also increase your risk of continuing hypothyroid symptoms. But you won't find that out unless you get your Free T4 and Free t3 measured at the same time.

2 likes
Reply

If you are in UK then getting private tests is likely necessary. As outlined in my first reply

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Just vitamin D

Vitamindtest.org.uk - £28 postal kit

Reply

As your iron levels are OK I'd try the simple thing, reduce your levothyroxine for a couple of weeks and see how you do. You could do what humanbean suggested and alternate between 50 and 75 mcg. I would skip your levothyroxine dose for two or three days just to being your fT4 levels down more quickly so you can see if it has a beneficial effect. If you just reduce your dose it will take weeks for your levels to come down.

Reply

Thank you for all your help😊

Reply

Hi LynnL, just a few numbers here. If you take your docs advice and take half of a 75 on Sunday you will be reducing your dose to 70mcg. If you take Jimh111's advice you will be reducing your dose to about 62mcg.

You will have to fiddle with these doses until you find a level where you do not feel ill. The way you do it is to count the number of 75's you take each week and the number of 50's (or the number of halves). Add them all together and divide by 7. That will be your daily dose. If that still makes you feel ill (in a hyper way) then drop the higher pill and replace it with the lower pill. See how you feel and adjust again if necessary.

This is a very fiddly stage of the game but many of us have to do it. It took me about a year to get to the perfect dose - and then you have your doc chiming in with their opinions which shake your confidence but keep going until you feel well. Rule of thumb, palpitations are usually due to over medication, sleepy, dragging, joint pains, feeling cold are usually under medication. One more, TSH usually has to hit about 1.0 before you are feeling well . (But these are just a very general rule of thumb).

Reply

It's very kind of you to give me such good advice, I have not taken my thyroid meds for the last two days, I'm feeling much better, I will start tomorrow on 50mcg, a doctor friend of ours wrote me a script for 25mcg, so I can play with the numbers. It's amazing how you people know so much more than these doctors out there. I live in Maryland and I have gone through a number of doc's, still looking for the right one.

1 like
Reply

Yes, that's another factor we may not have expected. I got through five docs before I found one who didn't drive me up the wall with his/her ignorance and general lack of interest. Don't be shy to change doctors. The other phenomena which you may have to do is drive a long way to get the right doc who will prescribe the right meds or at least work with us. I now drive a 400 mile round trip to see my good doc and get the right meds. Fortunately, I have a friend who lets me stay overnight when I have a doc's visit (only once a year now thank goodness). I listen to books on CD to stop going mad on the drive and I have discovered so many amazing authors, I now look forward to the six hours of a good story. I have discovered John Steinbeck, Michael Connelly, Sue Grafton, Stieg Larson, John Grisham, PDJames... a whole world I would never have known had I not had to travel miles and stupid miles to get my meds! We have to extract the good out of all situations sometimes.

Reply

Yes, you are right. I'm glad you found someone who will listen to you and you can trust. These days docs. that take the whole person into consideration is far and few in between.😊

Reply

You may also like...