ME/PVF/CFS and thyroid

[AKatieD]

Having recently been tested for hypothyroidism and hoping to get treatment starting Weds (third test lucky?!: 1st high TSH, second normal TSH but raised MCV and apparently third time raised TSH and MCV) I have started researching thyroid matters and found you all and Thyroid UK. Thanks for lots of valuable info and insights.

Anyway, I am now wondering about my teenage daughter, who has been diagnosed a year ago with ME or whichever acronym you chose to call it. She is perennially tired, her temperature control is screwy, she gets palpitations and dizziness, lacks concentration and memory and generally feels lousy. It is totally ruining her young life and looks like it will ruin her plans for the future (Uni etc) unless something can be found to help. She is due to attend University College Hospital's clinic for the first time in 2 weeks but I have no idea how much use they will be or if it will be - come back in 6 months and hope you feel better soon - like our local hospital.

Although, I am told she has been tested to see if her thyroid is OK, with my own recent experience I am wondering how credible the results are and what to do. If it really is caused by a virus then maybe there is no point in pursuing more thyroid testing? I don't want to upset my daughter by making a fuss unnecessarily but if there is a chance that some thyroid treatment may help than I certainly want to look into it.

Does anyone have any advice or experience to provide, especially any of you doctors out there? Any help would be great.

Thanks

Katie

[helvella Administrator Thyroid UK]

Katie,

Didn't want you to have no answers at all, so here goes.

Raised MCV can be due to insufficient B12 and/or folates.

Worth a look here:

emedicine.medscape.com/arti...

(And yes, it does also mention hypothyroidism as an aetiology.)

Do you have the actual results of the tests your duaghter has had? If not, I'd very much recommend you get them and post back, if possible.

Hoping that others know more about ME/PVF/CFS than do I.

Rod

[FRAN]

HI , I am new to site having had bloods done told I am borderline hypothriod having them rechecked next week following advice on this site .

I was diagnosed with ME back in 1986. Had a supportive GP & Conusultant at hospital, but it was very much the case of just rest.

Thankfully things have moved forward and it is a recognised condition.

Before you go for appt at find out about , consultant & team - how they approach ME. You can do this by going on to hospital website. Make a list of questions you both feel you need to ask . Go on to Dr Myhill site, which I found on this site , very informative, which I could have had information likes this when I felt unwell.

On of the things I did which helped was to have Hyperbaric Oxygen treatment, which I did at the MS centre in Exeter. They were very supportive and gave me advice on supplements which might help. But they will only treat people over 18yrs, I think there are only 2centres which have insurance cover to treat children.

My daughter has Complex Regional Pain Syndrome due to an injury, Idid my homework before seeing DRS with her, very much to their annoyance.But it paid of I managed to get the care I needed for her. Thankfully things are moving forward for her. Also she sees a wonderful lady who is Bowen Therapist, best money ever spent.

Good luck to both of you , hope soon feel better.