Help needed are my levels too low: Ive had an... - Thyroid UK

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Help needed are my levels too low

Benjamin1
Benjamin1

Ive had an underactive thyroid since the age of 9, its been under control until the past 3 years. I was taking 175mg per day, the dr said i was been overtreated so dropped my dose to 150, i felt normal on that dose but had my usual yearly bloods done and was told i need to drop my dose to 125mg. I started to feel tired, energyless, and generally unwell, i went back to my dr and requested to see a consultant who specialises in thyroid problems. I eventually seen a endocrinologist who advised i may need to drop my dose even more !! My recent blood results are T4 16.3 T3 3.2 and TSH 0.01 the consultant has now started me on T3 medication 20mg per day and dropped my T4 treatment to 100mg. I have been on this medication for 1 week now and i feel like a walking zombi, my consultant said that i should take my tablets in the morning after i have my morning coffee, i have read numerous articles saying you should not take your medication in the morning or not after drinking coffee. I would appreciate any advise regarding my thyroid levels, and also when i should be taking my medication.

Many many thanks

Lisa

18 Replies
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Welcome to the forum, Benjamin1.

I think your GP was concerned about your TSH being suppressed. Some doctors freak out when TSH is below range and this is likely to happen when anyone is taking more than 145mcg.

Your FT3 is very low which is why your endo has prescribed 20mcg T3 in addition to a reduced dose of 100mcg T4. T3 is 3 x more potent than T4 so endo has actually given you a dose increase and you are now taking the equivalent of 160mcg T4. T3 will keep your TSH suppressed and may possibly lower your FT4 but it will improve your T3 which is the active hormone you need to feel well. If you're feeling zombie-ish it's probably because you were undermedicated on 125mcg. It takes 48/72 hours for T3 to be absorbed and enter your cells and start working. Hopefully, you'll notice some improvement in symptoms a few more days.

T4+T3 should be taken one hour before, or two hours after food/drink, 2 hours away from supplements and other meds and 4 hours away from iron, calcium, vitamin D, and oestrogen. It should not be taken with coffee or just after it. Thyroid medication can be taken at any time of day or night if you observe the above but some people find taking T3 at night can make it hard to sleep. Others can't sleep unless they take T3 at night. Different strokes and all that :)

Thank u for your reply. I'm currently taking levothyroxine 100mg and liothyronine 20mg, I felt so much better when I was on 150mg of just levothyroxine. I don't have a problem with any smells that I know of, I'm just totally wiped out, headaches and feel rough, the night sweats are driving me crazy. Do you think I should go back onto 150mg thyroxine again ?

Thank you for your reply clutter, it's really helped me to understand my levels and why I am feeling so rough at the moment. I've been on the new meds for over 7 days now but im feeling worse on the new meds than previous, would you advise me to go back to my 150mg levothyroxine only as this is the dose I felt normal on even though the Dr said I was been overmedicated ? I will def not take my meds after my morning coffee hopefully that may help too.

I think I'm going to give it a try

shaws
shawsAdministrator

Take whatever makes you feel well. This is an excerpt:

Our treatment team uses the TSH level only initially to help clarify a patient’s thyroid status. But during treatment, we completely ignore the level. The reason is that the TSH level is totally irrelevant to normalizing the patient’s whole body metabolism and relieving his or her suffering. The only clinical value of the TSH level is to see the effect of a particular dose of thyroid hormone on the pituitary gland’s "thyrotroph" (TSH-secreting) cells.

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

Benjamin1
Benjamin1 in reply to shaws

Thank you so much for your reply, ive really felt like ive been banging my head up a brick wall. I started back on my 150mg of levothyroxine today, i went to my gp today and she said i must be guided by the consultant and not how i feel. How crazy so ive decided to take my medication into my own hands today. Do you think by seeing my t4, t3 and tsh that is the best thing to do ?

I really appreciate your help and advise

shaws
shawsAdministrator in reply to Benjamin1

If you were feeling better on 150mcg I would go back to that. I am not bothered by my own blood tests now as I feel good. My personal opinion is that if we have clinical symptoms we should have a test, if we feel well, just remain at that dose. Sometimes we have to adjust i.e. if weather is hot or cold.

If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse online article by Dr Toft and discuss with your GP or endo (Dr Toft was President of the British Thyroid Association) how low your TSH can go and also some T3 can be added (question 6).

Some of us do feel better with a low or suppressed TSH. Some Endos/GPs don't know much about adding T3. It is the active hormone that's needed in the billions of receptor cells. I don't think they quite understand the process themselves.

Two excerpts from the following link:

1 . So, to specifically answer your question: No, we don't finally have a blood test that matters—not unless a doctor's goal is to treat another lab value rather than his patients.

2. There is a growing coterie of physicians such as you. They’ve all enlightened themselves despite the shroud of darkness tenaciously held over the eyes of modern medicine by the endocrinology specialty. That you have freed yourself from so-called "fibromyalgia" is good. But that you’ve joined that growing clique of physicians suggests that the long-overdue liberation of millions of patients is on its way. Welcome to our side, and thank you for the patients you’ll free from the horrors of T4-replacement.

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

Benjamin1
Benjamin1 in reply to shaws

Thank you for your reply and thank you for your articles, I've had a look at Dr Lowes website it's very interesting indeed, so much valuable information to read. I will also email Louise for the Pulse report. Today I took 150mg of levothyroxine i need to get back to my best. I spoke to my consultant today I explained how I've felt taking the t3 and she still insisted I take the t3 but to increase my levothyroxine to 125mg, I said I would like to go back on the dose when I felt at my best 150mg levothyroxine and she said I would be over treated and my tsh would be suppressed which may lead to osteoarthritis. I'm 42 but currently feel like I'm more close to 92, I was just worried about my next blood test which I am due to have in 6 weeks at the hospital. Would you tell the consultant that I've switched to 150mg ?

faith63
faith63 in reply to Benjamin1

I would order my own meds from the internet and be done with doctors treating my thyroid and done with tests. Dr. Lowe only did tests initally for diagnosis.

Benjamin1
Benjamin1 in reply to faith63

How did you get to see Dr Lowe ? Can i book to go ?

helvella
helvellaAdministrator in reply to Benjamin1

Sadly, no. Have a look here:

thyroiduk.org.uk/tuk/news_a...

Search for "Lowe".

Benjamin1
Benjamin1 in reply to helvella

Thank you, so sorry to hear that x

shaws
shawsAdministrator in reply to Benjamin1

See how you go now your back on 150mcg. When I had 10mcg of T3 added my T4 was dropped by 50mcg and I felt much better than when on levo alone. We are all different. When you get your prescriptions filled, try to ensure you get the same make each time as there are several levothyroxine and fillers/binders if different may affect you. Tell your pharmacist to keep a stock for you.

Benjamin1
Benjamin1 in reply to shaws

Yes im going to carry on with 150mg and not take the t3 for the time being. My levothyroxine is actavis i will make sure i get given the same make every time, thanks for that i didnt realise !

sorry for butting in to this conversation,but whats the significance of having trouble with these smells,as I do,I hate the smell of them all,it gives me an instant headache and makes me feel sick,thanks

oh thanks for that info,Its good to know all these things

Thanks for your reply, can i ask if i increase my levothyroxine will that increase my t3 levels ?

Its so crazy i now know that i def need to stay on 150mg of thyroxine and def not take the t3, my only concern is that ive changed my medication from what the consultant has advised and im due to have another blood test in 6 weeks, do i admit to the consultant ive taken my meds into my own hands ?

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