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Tea Leaf - bear in mind that "normal" covers a multitude of sins - you may still have low-ish thryoid activity even if it's within the normal range. Personally I never feel happy unless my T4 is at the upper end of the normal range.
Am slowly feeling better having been on thyroxine for a week now,but my neck is ok one day and up again the next.Think this is my thyroid trying to work & swelling up when it does so.
Still not able to run for long,it's so frustrating.Patience, patience, patience!!!!
i hope you carry on feeling better now your thyroxene's taking effect. i'm sure you'll be back to normal soon!
I am your expert, I was diagnosed with Hashimoto's syndrome in 1982, since then I have completed approx. 12-14 marathons and a number of our local 30 k runs. The great news is once you are dignosed and go on Syn-Thyroid replacement your life will be wonderbar. Prior to my diagnosis I had seen about 7-8 doctors and at that time I was in Politcs. All the Docs said the same thing, "Oh , politics you are having stress, you are depressed, etc. Finally , I found a Brilliant Lady Doctor who said " You do not look well, let's run some tests". This Lady doctor saved my life , I was way , way , way over the danger level. Anyway, I am great now, feeling fine , some 24 years later. I was told if you have to have some some disease Hypo-thyroidism is o.k. , they have had the treatment and protocol for this for quite a while. My running after the diagnosis has been good. I am now off due to a knee injury, I think I have a torn something in my knee, it hurts. The doc thinks ( a Specialist thinks it may be torn or Bursitis, I will know soon. )
I am currently taking syn-thyroid, 0.150 , the blue pill. All I know is I felt terrible prior to being treated, once treated my hair became thick again, my face looked normal, I stopped having headaches ( I had being having a headache every day for three years ). Since 1992 , I have had maybe 4-5 headaches .
Good luck. Best wishes. Jerry
I seem to be lucky that it only took 2 doctors and 3 months to be taken seriously! Others like yourself have had a longer battle.
Am just taking it a day at a time, am due to put the thyroxine dose up next week & I'm desperate to get on with it.
Did/do you have a goitre? If mine doesn't settle, I will opt for surgery & have my thyroid taken out completely.
Hi Louise,
I did not have a goiter. The usual symptons when you have Hypo-thyroidisim , the ones i had were foggy memory, headaches, loss of hair, no energy, no motivation, i.e. couch potato . The good news is once you are on your meds you resume a normal life. I have heard the comparison of a life as a toad when you have Hypo-thyroidisim to a life as a Prince/Princess when you are cured.
Good luck. jerry
Are you in the USA? Synthroid isn't available here in the UK.
Hello to Shirl the Girl,
I live in the colonies ( Canada), we actually have snow today. This winter has been very mild but march has been cold. I am in Southern Ontario , the Toronto region. Lots of Brits here , Canada is still in many ways British, i.e. customs, culture, etc. I am off to work. Best wishes. Jerry
Does any one know if there is any history of thyroxin making you less tolerant of NSAIDs ( diclofenac- voltarol the brand).
I am asking as i have been taking this anti inflamatory pain killer for lower back pain off and on for some time without problems, although i hadn't taken any since beginning of my thyroxin treatment. Last week i took some Diclofenac and suffered anaphylactic shock!!
It seems strange to be OK with something and then suddenly become allergic to it.
Has any one had any experience of this?
Goodness - I hope you're feeling better now. Must have been very scary.
There's little in the medical literature about Diclofenac and thyroxine. One small study from 1990 found that Diclofenac caused TT4, TT3 and FT4 levels to decrease while FT3 increased. I believe however, there is a later paper proposing this was a laboratory artifact. Even if the original study is valid (and some current authoritative websites still refer to the findings), I don't think it would account for the reaction you got. At worst, a slightly elevated FT3 might make you feel a little hyper.
There is however a fair bit of evidence that, although rarely, Diclofenac has caused anaphylaxis. It's listed in the Diclofenac prescribing literature as a risk. The fact that you were OK with it before isn't significant. Allergy is a changed reaction to a substance.
Hope your doctor is on top of this for future reference.
Can I ask if you have the auto-immune variety of hypothyroidism?
And how scarey for you, Mandalil.
Am having a bad day today, completely worn out and glands up. Guess I have just over done it. Not due to put my thyroxine up till next week, can't wait.
Am enjoying the sunshine though.
As Louise M says....Blimey
Yes it has been diagnosed as autoimmune hypothyroidism, is that the same as Hashimoto's hypothyroidism?
Hi,
Yes Hypothyroidisim is also called Hashimoto's syndrome, interesting isn't it. It all sounds so serious, who said that life is to serious to be taken seriously ? First prize is dinner with Elvis.
No, not in the profession, just a patient. When I was diagnosed and heard all the horror stories about how decent treatment is hard to get, I decided I would manage the disease rather than vice versa. So I read everything I could, picked the brains of knowledgable people and generally became a thyroid bore! Sorry you're feeling rough. Recovery is a slow process but hopefully you're having longer good spells.
Hi mandalil
Yes, auto-immune = Hashi's. I have a very tentative theory that these huge allergic reactions are something to do with the faulty immune system. In my career years I worked all round the world and in some fairly off-the-beaten-track places. Got vaccinated for everything and got bitten by all kinds of insects but never had any reaction. I was always the one with fewest visible mosquito bites even with no repellant. Then I got these auto-immune conditions (3 at present) and now, I'm paranoid about vaccinations and insect bites because I get such a terrible allergic reaction. Arms and legs swell hugely, become very painful, angry and red. I had flu and pneumonia jabs 2 years ago and was way sicker than if I'd taken my chances and caught the bugs. These are not live vaccines so this shouldn't happen and no-one has been able to explain what's going on. I did ask V-Rap about this and she was going to dig out stuff on something called the immune cascade but I guess never got round to it. When I get some time, I'm going to have a poke around and see what I can find.
I did read somewhere that auto-immune conditions are triggered by an allergy to substances such as wheat have you ever had an allergy test?
Do you have any knowledge of this line in thinking?
Do you mind me asking what your 3 auto-immune conditions are? I'm just being nosey as i have now totted up;
Vasculitis,Hypothyroidism and the severe allergy.
I shall google the immune cascade thing it sounds interesting.
Hello again! Am soldiering on and managing to run up to 30 minutes a couple of times a week. Still going slowly with the levothyroxine (am on 50mcg & hoping to go up to 100 in 3 weeks time- my consultant is somewhat conservative!!)
I have had no ill effects from the thyroxine, just craving some more! But I am having problems with fluid retention & wondered if this is a Hashi's thing or something else entirely? My legs are very tight and puffy- relieved by massage only. I feel & look quite bloated despite no diet change. Have you experienced any of this? I wonder if it's just my body trying to sort out my metabolism?
Good to hear you're getting there. Slow is good with dose increases. The temptation is to go for it, but you may overshoot your 'sweet spot' and being over-medicated is much worse than being under-medicated.
The swelling is from the disease. The old name for hypothyroidism is myxoedema from the Greek meaning 'gel swelling'. It's caused by deposits of mucopolysaccharides all over the body but usually most noticably legs and ankles.
It can happen that when you start on a very low dose of thyroxine, your own thyroid production drops and you end up a bit more hypo than when you started. It will improve as your dose goes up.
Hang in there, you're making progress even if it doesn't feel like it some days. Keep us posted in how you're doing. Good luck.
Have signed up for one of the Race for Life 5k runs in June,& hopefully will be able to do a 10k in the autumn, even if I have to crawl my way round!!
The R4L events are lovely - they cater for everybody - runners, run/walkers, walkers and the rest. If you can run for half an hour now, you'll be finishing pretty far up the field. You'll RUN a 10k by the Autumn, no probs.
You won't get an immediate noticeable effect with a dose change (unless it tips you into being over-medicated).
It takes around 6-8 weeks for thyroxine levels to stabilise after a dose change and it can take a longer time for its effects to be noticed. Improvements in symptoms are subtle over a period of months or even years.
BB
I have a question for Shirl - how important do you think the T3 part of your treatment is as a runner? I've searched the web and I know that T3 is still controversial, but I've also read that other runners swear by it, particularly regarding long distance running.
Also, when I did try and return to my running club I found my heart was racing and then skipping beats - has anyone else found this? I'm really worried the thyroxine is damaging my heart in some way as I know this can be a sign of overmedication. But I've just started on the meds so could it just be my body adjusting? Anyone else get this?
On the T3, I honestly don't know how important it was for running because I only started running when I was diagnosed to help with recovery. But as far as my overall recovery was concerned, it made the difference for me between being something like 75% well to 100% well.
I had been up to 300mcg of thyroxine and still couldn't get rid of the last few symptoms, the worst of which was chronic constipation (think impaction). For me, starting the T3 was a revelation. Pretty much overnight, the symptoms went. Now, they will have to prise the T3 out of my cold, dead hand. It is possible to have T3 precribed on the NHS, it's just not that common (yet). The studies evaluating combined therapy against mono-therapy have, to date, been inconclusive.
It's not uncommon to have palpitations when starting thyroxine. Provided you are being regularly monitored by your GP, you're not going to damage your heart. Quite the opposite in fact - going un/under-medicated is a far greater risk for heart problems. Do you have a follow-up blood test and appointment booked?
BB
Thyroxine (T4) is an inactive, storage form of thyroid hormone. T3 (liothyronine) is the active thyroid hormone. A healthy thyroid gland produces a small quantity of T3 and a large quantity of T4. To be used in the body, the T4 has to be converted into T3. The conversion takes place in the liver and peripheral tissues.
How is the sleeping going? You were really suffering. I am due to go see my consultant next week again for bloods & hopefully a dosage increase. Feel I am slipping backwards symptom wise,getting tired again & still absolutely no wieight loss at all.
Did manage a 32 minute jogette last w/end, although it took me 2 days to recover!
When you have your bloods done, your consultant should be able to give you your levels for T3 & T4.I have started to keep a note of mine as they are done so I can see what's going on. can't rely on anyone else to keep the information in one place- my NHS GP is useless.
Shirl, from all my reading, 300mcg is a big dose. Did your consultant suggest T3 or did you?
T3 and T4 (and FT3/FT4) levels aren't routinely tested. The policy seems to vary from area to area but most labs will run TSH and if it comes back 'normal' will not do any further tests, even if GP has requested them on the form. In my area, because my TSH is suppressed (i.e. not 'normal') I usually get an FT3.
Keeping a note of your own lab results (along with dose and symptoms) is good advice.