Drs helpful advice (sarcasm over the word advice!) - Thyroid UK

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Drs helpful advice (sarcasm over the word advice!)

BWXX
BWXX

Hi, not posted here for a long time, I am sorry this may seem rambling, but I have had enough of feeling permanently tired. Decided rightly or wrongly, that Levo (75 mgs and alternating 100mgs the following day) despite levels previously coming back as 'in range' is doing nothing to help so I decided to stop meds for a week then start again doing this over the past month, this making no difference to how I feel (neither better nor worse). Went to the drs and my bloods have gone crazy. T4 9.1 (range 11-23) TSH 97.3 (range 0.27-4.5). I wouldn't have thought that start/stop would have made this much difference. However, the other thing to mention is that I am still struggling with giving up smoking. I have reduced to 4 a day (from 16+) and that I am now vaping. I seem to remember an article about this effecting results??

The dr rang me tonight querying my results and suggested that I increase to 100mg a day despite being told that when I was on this dose, I had episodes of not being able to slow my heart rate. His reply was 'well I cannot force you to take the meds'. I also queried why the drs never test T3 levels, his reply was 'this is not needed'. His final response was the reason I am tired all the time, is because of my thyroid (despite feeling no different from 2 years ago). He has asked for my bloods to be taken again, and if there has been no improvement, to refer me back to the endo.

Why do I feel cheated that I do not feel better, despite nearly cutting out cigs? I am starting to hear myself sound like a hypochondriac. Any advice would be appreciated.

8 Replies

fT3 is important as T3 is the active thyroid hormone. Insist this gets added to your next test and get the doctor to ensure the lab actually give a result for it.

Has the doctor tested for thyroid anti-bodies?

Failing all that, could you pay privately to have a thyroid profile done which includes ft3 and thyroid anti-bodies?

Have you had your vits and minerals tested - the usual few which are recommended in the forums and info on Thyroid UK?

Hi there,

I also went through a slump when I gave up smoking. Could be the body detoxing and adjusting to a new smoke free environment. It lasted weeks and was terrible but it went away. The difference is I am on NDT. Switched few months back and feeling great now. Maybe worth a try?

Vjdhkf
Vjdhkf in reply to AnnaSo

Could you please message me on how to get NDT please x

The problem with smoking is not so much that it affects blood results, but what it is doing to you. Tobacco smoke contains substances that affect both the function of the thyroid and the gland itself. One of these components is cyanide which, when smoked, is converted to anti-thyroid agent thiocyanate, known to inhibit the absorption of iodine into the thyroid. in turn, that lowers the production of hormones needed to regulate the liver, muscles, and other organ system. With hypothyroidism this will of course complicate symptoms of fatigue, weight gain, mood swings and take back many of the gains afforded by any hypo treatment. Associated persistent inflammation can also result in enlargement of the gland itself, which is of concern with Hashimoto's of course, and smoking appears to further diminish thyroid function while encouraging the development of goiters. So hence why maybe you've not seen benefits in your symptoms, coupled with the on:off taking of your Levo over a month which can't have helped. There's also some evidence that the flavourings used in vaping can have as serious a cardiotoxic effect as normal cigarettes ... Your latest blood results may have been a reactive blip so it's definitely important to have them done again, but without knowing what your levels were before you stopped medicating it's impossible to comment on the possible way forward.

SlowDragon
SlowDragonAdministrator

Have you perhaps had change in brand of Levothyroxine?

You also need vitamin D, folate, B12 and ferritin tested. Ask GP to test

Vitamins can crash down rapidly if stop taking Levothyroxine and may need supplementing to improve

Quitting smoking can increase TSH quite substantially for some

Presumably you have Hashimoto's?

verywellhealth.com/cigarett...

negosentro.com/why-quitting...

I think the smoking is having a lot less influence on the picture than you’re giving it credit for. Really you feel no better on levo than off it?

I’ve found varying the dose every other day is no good for me as I sleep only on the night I take the higher dose - so am going to start cutting pull in half to take v regular dosage. Maybe worth trying?

I don't think that there is any evidence that vaping is better for your health than smoking, long term (sciencenewsforstudents.org/...). If you've reduced the amount of nicotine you are ingesting, a B vitamin supplement might help (needs to contain a decent amount of B3). If you don't take your thyroid meds so that your TSH is high and thyroid hormones are low, you will feel tired and increase your risk of heart disease and dementia

I can't quite tell what you're asking about. If you take your Levothyroxine improperly, then you won't be getting much information about whether it's a good dose for you.

I definitely agree that its a bit of a shitty treatment, and could well be doing you no good. I myself came off it altogether for a few weeks, waitint till I felt worse to start on NDT, and I must never felt worse. I was in bed barely moving on it, and in bed barely moving without it.

Unfortunately, to get this stuff right there is a lot of hoop jumping, and with doctors you can oly get anywhere by jumping through the hoops they demand :( You can only ever progress beyond Levo by being able to say "I tried out the Levi exactly as you said for this long time, and here are all the symptoms I still have".

With the little I know about you I think there are 3 productive avenues you can try:

1) If your current prescribed dose of Levo is doing nothing, play about with it a bit. If it's possible you're overmedicated, try 75mcg per day and see if you feel any better. Stick with it for 6 weeks, get a blood test and readjust.

1b) Along similar lines, get all your past blood tests together and make a big post on the forum with loads of info. Then you'll get the best advice available for where to go next.

2) Look into vitamins and minerals. I glanced over your past post titles and saw you've done this in the past. But make sure this is all up to date. Get new blood tests, make sure any non-optimal and deficiencies of the past are still being treated properly. If you're lost, start by going to the GP and asking for ferritin, folate, B12, and vit D. If you can't get them, save up and buy a mailorder finger prick test.

3) Think about trying T3. If Levo has never given you any joy, even when tuned perfectly and great blood tests, you need to try the next thing on the list to try! Hammer down your doctor's door and hassle them constantly to get a prescription or Endo referral. Unfortunately this probably won't work, as they are cutting down more and more :( After trying that you'll have to plan to self medicate. There's tons of info on the forum about how to do it. Buy a small dose and take it with a reduced dose of your prescribed Levo.

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