I have been on 25mg Levothyroxine for 6 weeks. My Dr wanted me to wait 3 months before a retest but following advice on here I asked for a retest on Tuesday (6wks after starting medication)
I have got my tsh level result back and it has fallen from 7.5 to 5.1. When I rang for my result I have been told that my results are normal and to continue on 25g Levothyroxine and retest in 3 months.
I am still tired, loosing hair, have fluid in my legs, sore scalp and anxious although I do feel that the medication has taken the edge off my anxiety.
I have asked for a phone call which they have agreed for Friday.
I wondered if anybody had any guidelines that I can use when I get a call on Friday as I feel that I am going to have to fight for an increase in my dose of Levothyroxine and to shorten the length in between being tested.
My Dr does not yet know that I have had private blood tests done that show raised tpo antibodies at 130.
I would really appreciate any help please, thank you
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barleyblue
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I have got my tsh level result back and it has fallen from 7.5 to 5.1
When I rang for my result I have been told that my results are normal
No, that's not normal. When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
Point your GP in the direction of the NICE Clinical Knowledge Summary for Hypothyroidism and check out the "Initiation and Titration" of Levo
(You may have to click onto Prescribing Information then Levothyroxine)
The initial recommended dose is:◦For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.◾This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.
•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.
Also point out NHS Leeds Teaching Hospital information
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .......... This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L .......... Likely under Replacement
So you need a 25mcg increase immediately, retest in 6-8 weeks, repeating increasing/retesting every 6-8 weeks until your levels are where they need to be for you to feel well.
If your GP doesn't agree, then find another GP who actually cares about treating his patients properly.
I always find it easier to get my point across in a face to face consultation, it is too easy to get shut down in a telephone conversation.
As you have autoimmune thyroid disease (don't call it Hashimoto's they get confused) you should request testing of vitamin D, folate, ferritin and B12 and coeliac blood test too
But most important is to get 25mcg dose increase in Levothyroxine
Bloods retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
Update- my Dr rang me this morning. She has agreed to up my Levothyroxine to 50mg. I have picked this up and it is a different brand to the 25mg so hopefully I will be ok with it.
I questioned why she didn’t want to see me again for 3 months. She said that she could see that the medication was working and it wasn’t necessary to see me before as she wouldn’t adjust my medication before 3m.
I asked why the NICE guidelines stated otherwise and at that point she asked if I would like to be referred to a endocrinologist? I said yes please. And she has agreed. I am so happy..........
She did read off other guidelines and I am wondering if she is treating me as sub clinical as they didn’t match those that I printed off.
Be vary careful about the choice of endo. Most are diabetes specialists and know very little about thyroid, often making things worse. Many members have been extremely disappointed with their endo consultations.
You can send for the list of thyroid friendly endos from Dionne at
tukadmin@thyroiduk.org
and ask on the forum for feedback by private message on any that you can travel to. Then I would ask your GP to refer you to the one of your choice rather than a random, pot luck one who may be of no help to you.
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