Advice please

[Wwerty]

So I’ve finally done it and just post my first private blood test to check my full thyroid bloods.

Back story is I was diagnosed with under active thyroid back in july with positive antibodies and possible Hashimotos, I was getting palps on levo so dr stopped them end of October, the last 4 months have been hell, insomnia, shaky, internal tremors, so tired through the day, feel like I’ve got a lump in my throat which comes and goes, muscle aches joint pain, face feels puffy some days, feeling very down and having anxiety, back and forth to dr who keeps saying it’s health anxieties and won’t listen when I say all this started a week after stopping meds, she has only tested my tsh which was 3.1 after a morning test but I had drank some fresh orange and had a fag( bad I know, but the stress of this made me start smoking again) the next test she did was late afternoon and was again only tsh and it was 2.0, the range for tsh at my gp is0.45- 4.5, she is still saying I don’t have a thyroid problem and it’s all in my head, I’m just praying these results come back saying I do, I’ve got some levo thyroxine in my cupboard and I’m just so tempted to take one because the first time I ever took one I had the best night sleep I’d ever had, would it cause major problems if I just took them until my results come back

[Wwerty]

Another question, it’s probably sounds daft but could the antibodies mean graves as apposed to Hashimoto, it’s all so confusing

[greygoose in reply to Wwerty]

Which antibodies are they? And what is the level/range? Antibodies are very specific. If you have high TPO and/or Tg antibodies, the odds are you have Hashi's. For Grave's they are called TRAB or TSI. But, with a TSH of 3.1 it's not likely you have Grave's.

[Wwerty in reply to greygoose]

When I was first told I had an under active thyroid it was the tpo I think but will check, I’m just waiting on results from Medichecks to see what is going on, I’ve Ben shaking and jittery, can’t sleep but too tired to do anything, feel like I’m going crazy, my periods have gone to pot, all this started a week after dr stopped levo, I was just going to start taking in again but the dr scared me telling me I’ll end up in hospital, she wrote to Endo who stayed he thinks Hashimoto but she still won’t treat it

[greygoose in reply to Wwerty]

Your doctor should be shot! What does she mean 'you'll end up in hospital'? They don't just rush you into hospital because you're taking levo! She's treating you like a child. If you are hypo, and not taking thyroid hormone replacement, you're far more likely to end up in hospital with something serious, like heart failure! She has no idea what she's talking about. If you took the levo when you didn't need it, you'd feel so awful you'd soon stop. And, by the sound of your symptoms, you really do need it. Feeling like you're going crazy is a typical hypo feeling.

Palps are also a typical hypo symptom, and you were probably getting them because your dose was still too low. Although, as you have Hashi's - and positive TPOab do mean Hashi's - you could have had a freak rise in levels, but they always go down again by themselves. A TSH of 2 is too high for someone with Hashi's, and you need to go back on your levo again.

[Wwerty in reply to greygoose]

Thank you for replying, it was tpo antibodies that tested positive, my gp just keeps telling me about a patient that ended up in hospital because she gave her levo, I’m hoping Medichecks doesn’t take too long with results, I posted my sample this morning and paid for special delivery so it will get there before 1pm tomorrow.

What I can’t get her to understand is that my levels on levo never showed over medicated or below 2 .

[greygoose in reply to Wwerty]

Your doctor is an idiot. But, she feels guilty. Still, no excuse for mistreating a second patient, just because she made a mistake with a previous one. Besides, who says it was the levo that put the person in hospital? All sounds very iffy to me. She's behaving like a superstitious peasant! Can't you see somebody else, someone who doesn't cross themselves when you say 'hormones'?

[Wwerty in reply to greygoose]

I did see someone else and he told me he was certain that I have psoriatic arthritis lol because I have psoriasis on my elbows, and he has it and it made him feel a bit tired!I just shook my head and had the blood test which obviously came back negative, absolutely useless, I’m hoping Medichecks results prove me right and that will give me the confidence to demand they treat me or I will treat myself, it’s just too much of a coincidence that she stopped the meds and a week later I start feeling like I do and it’s got gradually worse, I’m desperate to go back to work and give my girls the life they deserve instead of praying for rain so I can suggest a movie and pj day on the sofa with snacks

[greygoose in reply to Wwerty]

Oh well, if they can't even diagnose and treat themselves, there's not much hope, is there.

I'm sure the results will be back soon. And then you will have firmer ground to stand on. And, if your doctor still refuses to see sense, consider self-treating. You really could not make a worse job of it than her!

[Wwerty]

25mcg, I best check the date

[Wwerty]

Thank you for responding, I’m done with drs, this site has given me the confidence to go it alone, even though it’s taken me 4 months lol, sat here in my winter coat with the heating on running a hot bath because I feel cold to the bone and constantly shivering is not normal

[Tina_Maria]

Are you taking anything at the moment? If you are being diagnosed as under-active and not treated for it - this could lead to more problems further down the line. It certainly can have an effect on anxiety and can cause palpitations. Feeling cold is also a result of not having enough 'fuel' for your metabolism.

Have you considered doing a private blood test, full thyroid panel plus vitamin status? That could give you an indication where you are exactly and what needs to be done. TSH only does not give you an indication where your T4 or T3 is.

Are you sure the palpitations are really due to the levothyroxine? If you are very under-active, the palpitations could be a result of not having enough levo; in addition, once you start levo, your own thyroid hormone production will probably reduce as well (as the body realises its getting it from elsewhere), so at the beginning you may have actually less available than before, which could exaggerate the problems. 25mcg is a very low dose to start with, if there are no cardiac problems and for people under 50 years, you could be started on 50mcg and then titrated up.

As a general rule of thumb (not for everyone as we are all individuals but it gives a rough estimate), a replacement dose of levothyroxine is around 1.6 mcg per kg of weight. So say you weigh 60kg you should get around 96mcg (nearest would be 100mcg) of levo as replacement. But as I said, some need more some need some T3 thrown in as well...

Hope you will get it sorted soon, don't give up, I know its a hard struggle, but it will get better. Good luck!

[Wwerty in reply to Tina_Maria]

Not on anything at the moment, dr stopped it 4 months ago because of palpitations, I still have palps now, this is when all my problems started, a week after stopping levo I started with shaking legs, jittery, anxiety, crying, only sleeping 5 hours max, weak, aching legs, swollen scalloped tongue, throwing the Hoover round leaves me exhausted, it’s like all the little symptoms I had before starting levo that I just put down to everyday life has come back with a vengeance, the internal shivering is the worse symptom as it is so unsettling and I can’t focus on anything else, it’s been hell these past 4 months, I’ve just posted my blood sample off this morning to medichecks snd hoping for a quick response.

[Tina_Maria in reply to Wwerty]

Ah good, the test should come back quickly and then you will know more. I still think that it will be the underactive thyroid that gives you the palpitations augmented by having less available when starting levo. There are also people who cannot tolerate levo, but you should certainly not be left out in the cold (no pun intended!) and suffer. Hope you get it all sorted soon.

[Hidden in reply to Wwerty]

25mcg is just a starting dose. In fact the usual starter is 50mcg. as was suggested, try 50 and see how you feel in a while. Some people do have to start slow and build up more gradually than others. Not all brands suit everyone either (the levo is the same, it's the fillers on the tablets that vary).

But you need to make sure the doctor reinstates your Levo and does proper tests, not just TSH. If you were positive for Hashimoto's antibodies you won't need to have them tested again, but must get at least TSH, T3 and T4 done at the same time.

Antibodies vary wildly anyway, and the only reason for testing is to show whether you have you have Hashis or another autoimmune condition.

I've found it helpful to make a bullet list of symptoms, (in your case) how they have changed since coming off Levothyroxine, and how this affects your life.

If the doctor still won't listen find a more helpful doctor. You could ask the reception staff. They don't know much medicine but they know their doctors. A receptionist saying (unasked) "He's very good", was how I discovered a gem of a doctor who was willing to listen and work with me to discover a way to deal with my remaining symptoms.

If that fails, write a polite, calm, factual letter to the practice manager, explaining what has happened (without dissing the doctor, just that you are ill and desperate and nobody seems able to help.

[SeasideSusie Remembering]

Lora

I actually stockpiled my Levothyroxine because I didn't have to pay for it. Unfortunately it went out of date so I had to throw it

You don't have to worry about that. Most tablets are good for at least 2 years past the expiry date, the only thing that may happen is possibly some loss of potency. I am currently using T3 that is dated June 2019 and it is absolutely fine. The most recent date in my stock of T3 is January 2020 and due to how much I have in stock it will very likely be at least some time in 2021 that I will get around to using that.

Wwerty don't worry about the date.

[SeasideSusie Remembering]

Yes, some people store NDT in the freezer, but you need to be careful when you come to use it. Only take out a small amount at a time, no more than a month, because it can lose it's potency very quickly. Also ensure that what's stored in the freezer is absolutely airtight.

[Buddy195 Administrator]

I too had terrible anxiety plus palpitations prior to being on an adequate dose of Levothyroxine & my vitamins being optimal. Once you post your Medichecks results, forum members (more knowledgable than I) will be able to offer great advice. I’ve followed the advice given to me on this forum & feel so much better!

[Marz]

Start a new post with your results so more people see them 🤔

[Wwerty in reply to Marz]

Thank you for replying, I’m sat on the edge of my seat waiting for results, they received sample yesterday morning so when I get result I will make a new post and hopefully start getting my life back x