Would I be crazy to start self-medicating with levothyroxine?

I'd really appreciate your advice.

I have a ridiculous number of hypothyroid symptoms, and have had for several years. In fact, I've never been blessed with an enormous amount of energy and despite trying to restrict my calorie intake, it takes forever to lose a few pounds (I'm currently more than 6 stones overweight and the only diet I've ever been successful on was a meal replacement diet - intake 450 calories a day). The moment I loosen the reins, even a little, the pounds seem to go right back on, with friends, within days.

Some of you will know that my OH has Hashi's and that we had to fight to get her treatment for her hypothyroidism. Eventually, she like so many others here has resorted to sourcing Armour on the internet. NDT has made an enormous difference - she can function now - but she isn't fully fit by any stretch and is in fact going to retire from her nursing job in August when she turns 55.

I'm 44. I have a job that feels more stressful than it really ought to be but I think that's because I'm exhausted all the time and my joints hurt all the time. It doesn't help that I think I'm heading into menopause because I keep having these weird hot moments - not yet flushes, but pretty uncomfortable while they last. My periods are becoming increasingly irregular too when this time last year I was having them every 28 days or so.

Having found this wonderful site when we were looking for advice and support for my OH, I've stuck around and learned an awful lot about hypothyroidism and its wayward friends, Vit B12 deficiency, ferritin deficiency, Vit D deficiency. I'm getting pretty good at reading blood test results and recently have even ventured into the realms of offering advice. And knowing that my symptoms matched so many of those whose stories are posted here, I decided to get myself some blood tests. In an ideal world, I'd have gone to a GP for these, but after witnessing OH's experience, I thought I'd dive straight into private blood testing and sent for the kits from Blue Horizon. My most recent tests were taken 3 months ago:

Total T4 was 93 (range 59-154)

TSH was 2.71 (range 0.27-4.2)

Free T4 was 14.6 (range 12.0-22.0)

Free T3 was 4.8 (range 3.1-6.8)

When I posted those results here, the consensus was that my thyroid probably wasn't happy, but I knew - from experience - that my GP wouldn't act on those results (we had enough trouble persuading the doctor to respond to OH's TSH of 7.2). My bloods tested negative for antibodies.

I thought maybe I had B12 deficiency, particularly as I get pins and needles in my hands when sleeping, but that came back fine (after being here for a while, I know it really is fine - it came back at 85 and that was the Active B12 test). Having spent rather a lot of money on testing at that point I stopped, but haven't tested ferritin or Vit D yet.

Anyway - sorry, this has turned into a novel! - I've recently reached the end of my rope, as they say. I'm exhausted but I can't sleep, find concentrating a real battle, keep getting horribly weepy all the time and living on painkillers for back pain and other assorted joint aches. I'm not sure how I'm going to carry on working, to be honest, I feel so poorly most days, especially when I have to travel, which is quite a lot.

My OH is now on NDT but still picks up her prescriptions for levothyroxine, just in case, so we have rather a lot of it around.

Do you think I'd be nuts to try taking 50mcg a day to see if it helped me feel better? Obviously I'd keep monitoring my own bloods to make sure everything was ok and would of course stop if I started getting any adverse side effects. Or is that a crazy thing to do? Would I actually make a borderline thyroid problem worse?

[Hidden]

No you're not crazy but do you think you have eliminated everything?

It is a possibility that the aches and pains could very well be eased if you have low iron/ferritin or Vit D. Have you considered if NutriT or NutriA would help (Thyroid & Adrenal supplements). Best sort everything before even considering self treating, we can't condone it of course as the first port of call should be your GP. Of course knowing the difficulties and seeing how your OH is treated is a big influence, a wake up call.

However, your GP should test iron as a matter of course, make sure it's ferritin not just Hb and no harm asking for Vit D too, otherwise a test is only £25 here (NHS lab) vitamindtest.org.uk/

best of luck Jane

[Hidden in reply to Hidden]

Weird, I replied to your post once - and Shaws' post - and they disappeared! Oh well...

Thank you. That's good advice. I've ordered some more blood tests from BH, so I'll wait to see what they say before I take the plunge. x

[shaws Administrator]

In his book Dr Skinner said there was no harm in giving a trial of thyroid gland hormones to see if it benefited the person.

[Hidden in reply to shaws]

Thank you Shaws, that's good to know. I guess most GPs would tell me that if it does work it's probably the placebo effect, but honestly, I'm past caring if it is - I just want to feel better. x

[Heloise]

I've been on all sorts of thyroid hormone for over 20 years and realize that doctors aren't that much help especially now that we have great information easily accessed. The only thing is you may start taking Levo and feel better for a while (although your numbers aren't awful and looking at your FT3, it is what many people post here for themselves. It's also a lot better than mine.)

But you may need increases since most people end up with 100 or 125 mcg of T4. You seem to have good conversion to FT3. This might help:

stopthethyroidmadness.com/m...

Even this website doesn't recommend going on your own even though they know how awful conventional medicine deals with it.

I think this functional neurologist has some good insights into how the thyroid works and it's not always the gland itself.

youtube.com/watch?v=qYeFh06...(Not working as expected?)

[Hidden in reply to Heloise]

Interesting video, thanks Heloise. Certainly food for thought. Just one thing - how can you tell that I have good conversion to T3? Because my T4 is low, or because my T3 isn't right at the bottom?

[Heloise in reply to Hidden]

Because your free T4 is not that high and yet FT3 is not bad by comparison. I might have expected it to be lower.

If you press the youtube icon at the bottom, more of his videos will come up and he covers lots of thyroid issues, 22 of them. There are several regarding cortisol and I'm always suspicious that the adrenal glands slow down first from stress and need thyroid to be working. Also one on leaky gut which can be from intolerance to gluten or dairy. They are all short so if you have time it would be worth your while.

[Hennerton]

I do not think you are crazy to try it. As Shaws said, Dr Skinner believed a trial of Levo was better than taking all manner of other medications to prop up an ailing body. Do you have his book? It would make you laugh and also feel much better about doing it yourself. He cites several patients who ignored his advice on doses and self dosed huge amounts, which solved all their problems. Definitely worth buying. Do be careful though, which I am sure you will and wait until you have had your Vit D, iron and Ferritin results, because if Ferritin is low, you will not use Levo efficiently and may get unpleasant side effects. Good luck!

[Hidden in reply to Hennerton]

Oh, I could really use a laugh! Maybe I'll get it. I have Dr Ps book but although it's really informative, it ain't funny. Ferritin, iron and Vit D tests ordered. x

[Hidden in reply to Hidden]

[shaws Administrator in reply to Hidden]

Maybe Thyroiduk.og's library have a copy you could borrow for the cost of postage.

[morena]

Not crazy at all. I recently put my dose up without consulting the GP as i couldnt get an appt. early enough. They werent very pleased; especially when i then went back and said I need a further increase. They initially said no, wait a while .....when i burst into tears as i felt so awful, she said; well. its your choice, but if you do that we need to check you in about 2 weeks to makesure you're ok. i went ahead and put myself up again. my blood pressure and heart rate remained stable to the drs' surprise. I will have bloods taken in about a month; it will be interesting to see what they are.....they were fine before my increase. Anyway, I now have no doubt that i can recognise when i need to alter my meds and will feel easier about self medicating if I feel the nedd.

[Hidden in reply to morena]

Why do they always think BP will go up? If you're correctly medicated, BP comes down! Glad you managed to persuade your GP. I know they're scared about you getting osteoporosis and atrial fibrillation, etc, but I think maybe eventually they'll put two and two together and realise that the osteoporosis at lease is probably caused by years of chronic under treatment.

[mauledtodeath]

Just watched the video posted. He talks about high cortisol blocking thyroid but what if cortisol is low as in adrenal fatigue. I assume you have to raise it to get the thyroid hormone to work again?

[cc120 in reply to mauledtodeath]

Yes, I want an answer to this also. Also LilyMay check your B12 levels.

[Hidden in reply to cc120]

Thanks cc. I think my B12 is ok - my active B12 test came back reasonably high.

[Hidden in reply to mauledtodeath]

At a cellular level, yes - I think that's why some people struggle when they first take T3.

[Heloise in reply to mauledtodeath]

Hi mauled and cc, after a while of high cortisol your adrenals will become sluggish.

When your adrenals become sluggish, the ACTH from your pituitary gland can continue harassing your sluggish adrenals to produce, even tho they can’t. And when the adrenals can’t respond with cortisol, they respond with extra estrogen production. And sadly, the higher your estrogen, the more bound both your thyroid hormones and cortisol will be.

[gabkad]

lilymay, is a sleep study a possibility?

[Hidden in reply to gabkad]

LOL, so they can watch me *not* sleep? I don't sleep well in my own bed. I can imagine I wouldn't sleep at all for a sleep study.

Interesting idea though. I can't work out if I'm getting stressed because I'm tired or whether the stress is making me tired. I realise that not sleeping would seem to point away from me having sub clinical hypothyroidism. My OH, even on medication, just seem to pass out most nights (and often during the day!).

[gabkad in reply to Hidden]

When I had my sleep study, I didn't fall asleep until 2.5 hours of just lying there. Then I did and it was shallow sleep until a long REM period after which they damn well woke me up. I was not pleased at all. I was more exhausted than ever but the sleep study was informative.

Before I finally got Cytomel prescribed, I know I was myxedematous enough so my soft palate was blocking my breathing out. The muscles in the throat were weak. I could breathe in through my nose but was breathing out through my mouth. These days I know my breathing is good although I don't know if there's an apnea happening. There were none in the past.

Poor sleep makes for awful days. Been there. I've been taking a sleeping pill for the past 14 years because there's something wrong with my brain. (Neurospect scan results)

But at least since I wasn't having apneas, I know it's safe to take the pills. Sleep meds make apnea worse.

Before I went to see the endocrinologist and I knew there were some sleep breathing issues, I was entirely willing to get another sleep study done. I know all the terrible health problems associated with sleep apnea and being a pragmatic person, I'd use an APAP if I needed it. No question about it. My brain only functions well when it gets oxygen.

[Clutter]

LilyMay,

I think you'd be crazy not to try 50mcg T4 for a trial period. Early menopause signs can be a hypo symptom and sometimes thyroid replacement restores regularity. Your TSH isn't terribly high but is high enough to cause many people to feel unwell and your FT4 is low which may mean you'll struggle to convert FT3. FT4 and FT3 will ideally be in the top 75% of range.

Please check your vitD and ferritin. I felt so much better when my vitd deficiency was corrected and still supplement 5,000iu daily as hip and knee join pain resumed when I stopped for 6 weeks. In the meantime, magnesium citrate helps promote sleep and eases aches and pains. Take zinc with magnesium to maintain balance.

vitamindcouncil.org/vitamin...

[Hidden]

Thanks Jackie, glad you don't think I'm crazy. I had already considered whether my thyroid was struggling because of some nutritional deficiency or another. It's definitely worth checking, and hey, as we've just had payday, I've ordered some tests. I've wondered about ferritin for a while, as before my periods went AWOL (think my cycle is now on day 54; the one before that was 52...) I had some ridiculously heavy ones.

I do wish someone would have a fresh go at redefining the "normal" range for TSH, FT4 and FT3. Is it too much to ask to find a few thousand healthy people and check their TFTs? Maybe that's the problem. Maybe no one over the age of 30 feels particularly healthy...

[celticlady]

Maybe try 25 mcg to start not 50-just be careful.

[thyroidgriffin]

Has there been evidence re the pins n needles jands? That jusy started w me & is getting worse...thought it was a cervical disc issue until I just joinef this group last week.

How about ringing in the ears? Have u ever seen that as a hypo symptom?

This is so confu sing!