My daughter saw Doctor S. a couple of months ago. He started her on 50mcg levo, then increased to 75mcg and she is now on 100mcg which she has been on for a week. In total she has been on the levo for 6 weeks and is not feeling any better at all. She is still extremely tierd and has slept all day today and is very achy and feeling depressed.
Her period is due shortly so maybe this is contributing to her mood although she does use Progesterone cream to help this. She was hoping she would feel at least a little better by now, but as she only recently increased to 100mcg will it take longer before any improvement. Any advice would be appreciated.
Many thanks browny
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lucylocks
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Can I ask please how old your daughter is and if she has had an infectious disease like Roseola (HHV6 virus) or Glandular fever (Epstein Barr virus), or if there is any possibility that she may have Lyme Disease.
I assume Dr. S has checked her vitamin/mineral levels and adrenal function.
Thanks for your reply, my daughter is 31. She has not had glandular fever or Lyme disease and I do not know what HHV6 virus is. She does have Celiac disease and sticks to a strict gluten free diet.
She is very low on iron which her doctor gave her tablets for and Dr. Skinner told her to double them.
He did not mention her adrenal function, he did check her temperature which is 35.0 and felt her hands which are always really cold. He looked at her tongue and said that was O.K
Before seeing Dr. Skinner her own Dr. diagnose CFS. but did several blood tests.
Her TSH was 3.2 Vit B12 501 Vit D 52 Low Iron low Calcium (parathyroids checked and said were normal) Magnesium 51 bottom of range 50. This is the only info Doctor gave her about tests.
I will add that she started to feel unwell aprrox 6 months after been diagnosed with celiac. She also went in hospital to have a repair to her perineum after she had problems with it from the birth of her first child 18 months previous and whilst on the operating table the anethasist notice a goitre in her neck,bloods were taken and she was told her thyroid levels were out but by the time she saw an endo and had more bloods taken endo said they were O.K. but as I say all her symptoms started then.
6 weeks is really not long, it can take 8-12 weeks for any effect to be felt and 18-24 months to get to the right level. Also raising the dose quickly may not be right for her, many stay on a dose for 6-8 weeks then have a blood test before increasing the dose, doing it slowly does suit most people better. As her TSH was 3.2 which isn't hugely high there isn't any need to raise the dose quickly, slowly is best to give the body a chance to adjust to each dose. There is no quick fix with this, even those who have been on meds for many years ( like me ) have to take it slowly when jiggling with doses.
My daughter has increased the dosage per Dr.S instructions. She does have an appt. for blood tests next week so hopefully this may give us more idea to what's going on.
Hi I have just googled HHV6 and as I understand it is something to do with herpes virus, my daughter has suffered from severe cold sores around her mouth since been very young, I am
Hi Browny, I'm so sorry to hear of your daughter's problems. The celiac must be a real problem and I guess she has absorption difficulties.
What sort of magnesium test was done? A blood test is not sufficient. She will need an intracelluar test.
Please see my reply to "T3sortedme" below. I can't recommend Dr. Nathan's book highly enough. It is well worth a read. He has a chapter on gut dysbiosis. Also have you seen Dr. Myhill's information?: drmyhill.co.uk/wiki/Gut_dys...
My daughter found that L-Glutamine and making Kefir has relieved a good deal of her discomfort.
You have got me intrigued! What are the issues/links with glandular fever and Lyme disease? I had glandular fever (aged 27) and 6 years ago had African Tick Bite fever which is very similar (aged 53). It went untreated (flue like symptoms) as UK doctors did not recognise the bite mark (necrosis ring). Very shortly after my energy problems began and with time my thyroid problem emerged (followed by 2 yrs ineffective T4 treatment and 1 year ago pure T3 with great success). What is the link??
The issue is the biotoxins from the infecting agents still in the body which some people are genetically unable to deal with. The pioneer into research in this area is Dr. Richard Shoemaker.
These biotoxins can cause multi-system, multi symptom illnesses including endocrine problems. Please note also that the test used for Lyme disease in this country is largely ineffective. You need the Western Blot Test.
A year ago I had never heard about this problem, but have been on a steep learning curve since. It is really worth checking out.
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Increase Levo or not? 
Better then feeling rubbish again on 50 mcg
Tsh and t4 rising on treatment 
16 year old daughter started on T3 after years of T4 - consultant querying need for NDT
