Fighting for my son

My son who is 27 years old, has survived cancer twice. He now suffers from fibromyalgia. As know one in our local hospital specialises in this condition, I took him down to London to Guy's to see a specialist. It has really proved to be a waste of time, all that he did was check his vit D, which was low and prescribed Vit. D. His hair is falling out in places, he is constantly tired, and his blood pressure is too high, he has dry skin, and I think he may have an underactive thyroid, which I suffer with. His cancer consultant at the hospital asked for a thyroid check to be done and because his TSH level fell into the normal range they wouldn't test his T3 OR T4. Because his TSH is normal does this rule out thyroid problems?

We are trying to wean him off a drug called Gabapentin which he takes four times a day, I looked at the side effects and saw it could be the cause of his high blood pressure. I have fought and monitored all his health problems because I've found GP's are useless. He was diagnosed with cancer at 18 and that was because I took him down to A &E because I was sure there was something wrong, he had been going to his GP for two years, she hadn't a clue even though he had classic signs of Hodgkins Lyphoma, by the time he was diagnosed through my intervention he was a stage 3. So far he hasn't had a life, he has lurched from one problem to another, I think they now are discovering that chemotherapy long term, on younger patients causes lasting long term damage on the body leading to other medical problems.

Should I pursue the thyroid test for T3 and T4, sorry to be so long winded but I am so desperate for him to lead a normal life free from pain, fatigue, infections etc.

14 Replies

  • Am so sorry to hear you are having such a difficult time with trying to find the best treatment for your son. I was promising to have a day off today but felt compelled to write :-) I think your Mothers instinct needs to be followed up. The TSH is not enough to say yes or no to a thyroid problem as you probably know. I do think he should have his anti-bodies tested for Hashimotos - Anti-TPO and Anti-Tg. It is the most common form of thyroid illness. Both my husband and I have it and both our Mums had NHL ( no thyroid diagnosis )

    Chemo certainly has an effect on the thyroid and its activity and yes he needs the FT4 and FT3 tested. I would also add Ferritin ( Hair loss ) - Iron - B12 - Folate. All levels need to be near the top and Ferritin around 70/80/90. It is good that he had VitD tested as most poorly people with any condition invariably will have low levels. What dose is he taking ? - and ensure it is taken with something fatty as VitD is fat soluble. VitD as you may know is more than a vitamin - it is anti-inflammatory - and a steroidal pre-hormone.

    Perhaps you are able to obtain copies of his results and post with ranges....lots of people will be happy to help and advise....

    Do hope things soon improve for your son - and keep on following your intuition....

  • Thank you Marz. It was a fluke that we found out about his blood pressure, which was very high for someone of his age. We saw our doctor later in the week, who was very nonchalant. His response was "OH we'll check it again in a few weeks" So we bought a blood pressure monitor and all his reading were far too high, we went back to the doctors a week later, who then apologised, I'm just sooo fed up with them all.

    Will make sure that the proper tests are completed. They must groan when they hear my name at the surgery. ha ha

  • What VitD and dose is he taking ?

  • Hi Marz, Fultium D 20 micrograms daily.

  • Ok so that is the equivalent of 800 IU's daily - which is actually quite a low dose.

    Take a look at the chart on....

    You can see that you dose according to the result. It is a Canadian site so the measurement may be different. I live in Crete so its the same one for me :-)

    .....also lots of good information. Click onto health conditions at the top.

  • Thank you so much for your advice Marz.

  • Hettie,

    Normally, I lurk and just search the site for information on how to help my partner. But, I felt compelled to write, because this situation really is madness. I'm so sorry for what you are going through.

    I advise reading everything you can from Dr. John C. Lowe on fibromyalgia and thyroid health. You'll need to arm yourself because doctors in the UK don't seem to know anything about the thyroid. Several doctors have done their best to try and kill my partner and if we didn't take treatment out of their hands he would be dead by now. I'm not even joking. He's deathly allergic to levo and even though they watched it almost kill him, they wouldn't give him natural desiccated thyroid. Yea.. so, once your doctor does the same thing, look into ordering NDT online.

    After you read a good body of Dr. Lowe's work, you'll have a good idea on how to self treat. I hear Blue Horizons is a good way of doing your own blood work. You should have free T3 and T4 tested but as you are reading, you'll find out that those numbers aren't everything, either. If you go through the NHS, be careful. Double check every word they say, they've been 100% wrong on everything they've ever told us. Read about goitrogens too and double check all of your son's medication to make sure they aren't a problem. Don't take anything the doctor gives you without checking it yourself.

  • It's absolute madness isn't it? What use are doctors really? My son would have died of cancer if I hadn't taken the course of action I did.

    Thank you so much for advice. I will do as much reading as I can.

  • Sorry to hear ur misfortunes regarding ur son,as per the previous replies arm urself with knowledge .I would also guide you towards the without a thyroid facebook site ,it is full of knowledgable people ,they also refer u to the stop the thyroid madness site and will add links to ur questions .I would also get ur sons mineral status done ,especially magnesium at a red blood cell test ,not plasma .There is only 1% mag in the blood .The rest is in the cells and bones.Vit d suppplements depletes magnesium ,and when u r depleted in magnesium you will be depleted in other minerals (guaranteed).Magnesium is the master mineral and when depleted it causes a huge amount of symptoms.To learn about mag ,go to carolyn deans site (google it).

    Dont wait on our docs to help u out with any of this.They told me my mag was ok until i learned all about it ,andwhen i got my rbc mag checked privately ,i was seveley deficient.

    Good luck for u and ur son

  • Many, many thanks for your advice.

  • Why you dont try woth the protocol DR ROBERT YOUNG PH MIRACLE..there are many cases of cancer he cured ...this is the link in facebook

  • My heart goes out to you and your son - I bet you spend every minute you're not at medical appointments researching on-line, since you've been so badly let down by so many doctors. With so much going on physically, it's a huge job to figure out what's causing the fatigue. If none of the other tests suggested above show a cause and a thyroid anitibodies test is positive (even if his TSH is in range), T3 medication (liothyronine) might well be helpful. My endocrinologist sees no line between fibromyalgia and hypothyroidism and has improved my fibromyalgia immensely by adding T3 to my thyroxine (T4) though, of course, I do not have the horrible, complicated medical history of your son to contend with. If this appears to be the right course to take this site will help you find a doctor who will prescribe T3 if you can't find one locally.

    Also, my endo recommended that I take 50mcg (2,000iu) of VitD a day, even though mine was measured in range.

    Hope you have someone to support you while you support your son.

    Very best wishes to both of you.


  • I am really sorry to hear about your son's suffering and poor quality of life. I really do hope he finds some solution to his pain.

    I have been taking some sublingual multivitamin and b12 boost (containing methylcobalamin) by Better You which I purchased in Holland and Barrett and have to say I have felt a decent level of improvement since taking it 2 weeks ago. I was suffering with really bad hair fall from the roots and chronic body pain, which I suspect to be fibromyalgia, although not officially diagnosed.

    It has all eased off and just wanted to share as it may help your sons hair loss and pain.


  • Thank you so much for your kind words, and advice. Sorry about the late response, have been away for a few days on a much needed break.

You may also like...