NDT- willing to try anything right now!

[LuluCops]

I understand that due to guidelines I won’t get any recommendations directly on this post, I would be very grateful however for direct messages that may help.

I am severely undermedicated, I’ve been on 25mg of Levo for almost two years now and I’ve just been getting sicker and sicker. Really bad hypo symptoms. BUT..... I didn’t know this was (in part) down to my thyroid! I say in part because I was diagnosed with adrenal insufficiency in Oct 2017, I had been very ill before that for around a year, they thought I had MS (I have Fibro) and tested me for it, which came back clear- they just put it down to my Fibro getting worse. In September 2017, 2 weeks before my wedding, I ended up in hospital as I virtually lost the sight in my left eye due to extreme blurred and double vision! I was also struggling to stay awake and I spent 3 days just drifting in and out of a semi conscious state of sleep. In the end they gave me a ct scan and decided that the pressure in my brain had built up and gotten too high and gave me a spinal tap, 4 days later, I got most of my sight back. I had to wear an eye patch to allow my eye to heal but at least I was able to get married on the Saturday! (Without my patch!!)

I still suffer blurred vision, and after a certain time of night, my sight deteriorates, the double vision gets worse and I practically lose my sight, but they can find no reason for this.

I had been referred to a pain specialist before this happened, and the appointment for that came through for October. While there I happened to mention my previous hospital admission, she asked if they had done bloods and it was while she was checking these that she found the abnormalities with my cortisol. Three days later I was diagnosed with AI.

This was 16 months after my hypo diagnosis, after initial treatment with HC I again started to go downhill. I’ve had a couple of adrenal crisis’ that have required hospital admission. It’s been a very steep learning curve that hasn’t been easy to cope with. Since I found this site- thanks to the ADSHG forums, I have learnt a hell of a lot about my thyroid and my body. I’m working hard to replenish my vitamin levels, I’ve been taking daily Vit D supplements, from the GP for many years, yet it wasn’t until I posted my results here that I was informed that I was still on the very low side, because it wasn’t picked up on or discussed! I’ve many, many symptoms of B12d, especially neurological ones that we had put down to my Fibro worsening or the AI, my levels were also on the low side for that too, and although I’ve tested negative for the IFAB, I know this isn’t reliable as 40-60% of people do test negative for it, but GP’s and even some haematologists don’t seem to know this!! And I’ve been refused the other two tests I need. 🤷🏻‍♀️

I’m now self injecting every other day.

I’m also low in Folate so I will be starting the supplements for this as soon as I’ve managed to sort out some stability with my b12.

I’m now waiting for a referral to the specialist thyroid clinic in Cardiff, I may not be able to get an appointment there because it’s out of my area, it is part of a large teaching hospital though so I’m hoping I can get around the out of area predicament by using this?

My endo has said that my blood work is ‘fine and within normal ranges, if they were to put my Levo up anymore I would be ‘too suppressed!’

My TSH was 0.36 in April, 0.63 in June, and 1.39 in July! (The ranges for the April and June dates is 0.3-4.4ml/UL and 0.27-4.2ml/UL) my FT3 & FT4 was only done with the medichecks test in July and was FT3 3.83pmol/L (range 3.1-6.8pmol/L) FT4 13.40pmol/L (range 12-22pmol/L)

Thank you for reading this far, I appreciate it’s very long winded, I just wanted to give you all some background so you know where I am now and where I’ve come from.

I am looking to source some reputable and reasonable NDT or T3, but as I am unable to get my GP or current Endo to ‘up’ my dose of L-T4, I’m guessing that T3 alone isn’t going to be much use to me?? And therefore, NDT would be a better choice? Am I correct in saying that? Any help and or advice would be brilliant. I seem to be relying on and listening more to this amazing forum and it’s people much more than those that are ‘supposedly’ qualified to look after me!! I don’t know whether to be worried about this or not, my hubby is, but my reply at the moment is that I’ve learnt more in the last two months about my body, it’s needs and my conditions, than I have in my last 4-5 years of suffering extreme illness and ill health!! I guess therein lies my answer! Thank you- for saving my life and my sanity!

I look forward to any replies and private message that I may receive, and thank you in advance!

Shelley xx

[SlowDragon Administrator]

Looking at your Medichecks results here

healthunlocked.com/thyroidu...

are you now taking a good quality daily vitamin b complex to improve your low folate?

Which Vitamin D are you taking? Levels was still too low. Aiming to improve vitamin D to at least 80nmol and around 100nmol may be better

Good quality daily C can help support adrenals and may help improve absorption of iron and help improve low ferritin

[LuluCops in reply to SlowDragon]

I am taking the oral spray by better you 3000iu + K2, I’m taking 2-3 sprays of that per day

I know I need to take some magnesium but I don’t know how to tell which one is best suited to me!?? Is there a rhyme or reason to working it out?

I’m taking the Ingennus B complex that was recommended here, again I followed the suggestions on here and waited a few days after my B12 injections before I started it.

Thank you SD, apologies for the late reply- going through it a bit at the moment with one of my daughters 🤷🏻‍♀️

Shelley xx

[SlowDragon Administrator in reply to LuluCops]

Calm vitality magnesium powder is cheap and easy to use. (Widely available eg Amazon) But best start on small dose, as too much can cause diarrhoea

Re-mag is good, doesn't upset tummy at all, but is very expensive. Only available in UK from Botanical health (Re-mag was apparently developed by Carolyn Dean, who wrote excellent book, The Magnesium miracle)

I noticed Igennus do a magnesium. Not tried it myself, but thinking of doing so

[endomad]

My endo is way out my area. I told my gp who I wanted to be referred to, it is our right as patients which dr/hospital we see a specialist, gp printed out referal while I was there and I called and made appt, sometimes we need to be a bit pushy.

The only upside to the shocking lack of treatment we get is it pushes us to educate ourselves. I had to find what worked for me by self sourcing, I'm on my 3rd gp and 3rd endo. 2016 my endo took over prescribing my T3. Once I was taking enough t3 most of my huge list of symptoms went, I lost 4 years of my life to extreme pain and bone crushing fatigue but it forced me to take control of my life/health. It was best thing I ever did, it was a complete leap of faith. I was so ill I had nothing to lose, thank god for support groups. My husband was also worried about my starting to self medicate until 2 weeks in he saw a dramatic difference in me on NDT he then started attending all my appts. X

[MaisieGray in reply to endomad]

Just to clarify, as that's not exactly correct, we can be referred to a hospital of our choice only if that hospital provides the services we need; and we can't insist which Dr we see - we may express a preference for a particular specialist and may see him but equally may be seen only by one of his team. We can't insist on being seen only by one particular Dr if they aren't available.

[endomad in reply to MaisieGray]

I have always been seen by the endo of my choice, I only book appts when I know he is there (mondays) the reception staff have only once in 3 years called in advance to say he would not be in and changed my appt for me. I see him every 3 months, personally i dont want to be bounced between a diff consultant every time, good ones are hard to find. The first 2 endo's i saw were useless, so i know the value of seeing the right person by experience.

I got my choice of surgeon when thyroid removed, cardiologist and hearing specialist, so i must be doing something right or maybe just lucky. I am however flexible and dont mind waiting an extra 4 weeks to see the right person.

[Hidden]

Your free Ts are at the bottom of range so no wonder you feel hypo!

25 mcg of T4 is a starter dose in elderly people and people with heart conditions. In younger, otherwise healthy people, the usual starter dose is 50 mcg, raised by 25 mcg every six or so weeks until complete symptom-relief.

Your doctor has kept you on a tiny starter dose for two years based on your TSH which is borderline criminal IMHO!

A common maintenance dose of T4 is 100-150 mcg daily, with many taking 200 mcg or more.

In my experience, it's very unusual for people with full-blown hypothyroidism to recover fully on 25 mcg which is really a tiny dose.

However, I think it's too soon to be considering switching to NDT or adding T3 at the moment, for the simple reason you don't know if you convert enough T4 to T3. There is not enough T4 to convert to T3 at the moment, so you need to get your FT4 levels up first. Many people who end up symptom-free on T4 only have free T4 levels close to or even slightly above the upper normal limit, regardless of how low their TSH ends up. If your FT4 levels are optimal and you remain symptomatic, then it's time to consider adding; T3 or switching to NDT. There is no way of telling which solution would work best for you; it's highly indivual so all about trial and error. But I think it would be a good idea to try to optimise your free T4 levels first, and see how that affects your FT3 levels, before deciding T4 only does not work for you.

Many people do well on T4 only drugs, provided they are good converters, so my advice would be to try to get your free T4 levels optimal before considering alternative treatment.

If your doctor won't listen to you, you should try to find another one who knows more about the treatment of thyroid disease. A good doctor knows that the free Ts are the most important indicators as they are the actual thyroid hormones, whereas the TSH is a pituitary hormone.

[LuluCops in reply to Hidden]

I have had a scan of my pituitary to check for tumours and the such as part of my AI diagnosis. It was clear. Do I need to ask for any other tests for it? Any help gratefully received as I am still looking for ways to reduce my HC as at the moment I take 30-35mg a day and I’d like to get this down to 20mg a day. xx

[greygoose in reply to LuluCops]

Yes, you do. If you have a pituitary problem, it could also be the cause of your AI - not to mention all your other health problems. And your doctors are an absolute bunch of useless numbskulls not to have thought of it a long time ago. So, you need other pituitary hormones tested, like HGH and ATCH. But I think you're going to have to insist pretty forcefully because it would appear your doctors are brain-dead!

SeasideSusie wrote a good response about Central hypo earlier today in this thread:

healthunlocked.com/thyroidu...

[LuluCops in reply to greygoose]

As always gg you make me smile with your forthright replies!

I think I had my ACTH tested some time ago when first diagnosed with AI and it came back normal. I know that even after having the sst and having the ACTH pushed through my cannula that my cortisol levels still did not rise above 27nmol/L!! And it’s only after having a shot of HC and some oral HC that I started to feel a bit better.

Thank you

Shelley xx

[greygoose in reply to LuluCops]

You're welcome. But beware of the label 'normal'. It doesn't mean what most doctors think it does.

[Angel_of_the_North]

Since you also have adrenal issues, it is quite possible that your hypothyroidism is due to pituitary problems so you'll never have a high TSH even though your actual thyroid hormones are bottom of the range. GPs aren't trained to recognize it, so you may do better with a decent endo. I suspect you just need an increase in levo (or a couple of increases) to get your thyroid hormones near the top of the range, not the bottom

[LuluCops]

Sorry I should’ve mentioned that I was on a higher dose of Levo for about a year or so before it was dropped because my levels came ‘normal’. Unfortunately back then, I had no idea about levels or anything like that. It was dropped from 100 to 50 and then to 25 where it has stayed for the last two years. I’ve never felt well on T4 only even when it was on 100mg. I have absorption and metabolising issues anyway.

I have to have much, much higher levels of medications such as pain killers (even opiates) before they get into my system and make a difference. I also have a problem with my opioid receptors, although I appreciate this won’t have any affect on my thyroid or thyroid meds.

Thank you for your replies everyone xx

[greygoose in reply to LuluCops]

In that case, they should have increased your levo, not reduced to practically nothing. You don't reduce levo because someone's levels are in 'normal range', that's rediculous. They have absolutely no idea what they're doing, and it makes me so angry to see people messed about by a bunch of clowns masquerading as doctors, the way you have. They all want shooting.

[SlowDragon Administrator in reply to LuluCops]

Then you need to slowly increase dose back up again in 25mcg steps. Self medicating if necessary.

The aim of Levothyroxine is to be taking enough for levels to be "normal". GP is utterly clueless if then reduced dose

TSH should be under 2, many need a TSH well under one. FT4 in top third of range and FT3 at least half way in range

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Guidelines on dose by weight is that 1.6mcg Levothyroxine per kilo of your weight if likely good approximation

If FT3 remains low once TSH is low, FT4 high and all vitamins optimal......then look at seeing recommended endocrinologist for prescription of small dose of T3

[Hidden in reply to LuluCops]

I already knew many doctors are clueless when it comes to diagnosing and treating thyroid disease properly, but this takes it to a whole new level: so your doctor decreased your meds once your levels looked normal, so basically believing that normal labs mean "cured", thus not understanding hypothyroidism is almost always a condition requiring life-long treatment...?!??!

[LuluCops in reply to Hidden]

Basically cat- yes that’s right! And they are completely clueless even now, after being presented with my latest medichecks results!! 🤔🤔😂😡

[MaisieGray]

That isn't how thyroid hormone replacement works. We increase the dose until we reach the level that is required to bring FT4 and FT3 to an optimal level, and that's the dose we need - it should not be reduced because we've reached a "normal" level. It may have been the case that even 100 mcg Levo wasn't enough for you, it's not a large dose, especially if you have absorption issues, and that's perhaps why you didn't feel well - given that you had a Dr who advised as he did, anything is possible. Whatever were your levels at that point, the Medichecks results show they are woefully low now, and it's no wonder you aren't feeling well. You are undermedicated.

[Batty1]

Congratulations 😊

[LuluCops in reply to Batty1]

Congratulations on what Batty1?

[Batty1 in reply to LuluCops]

Getting married!

[LuluCops in reply to Batty1]

Ahhh right!! Thank you xx

[LuluCops]

At the time it was only my TSH that was tested. I’m still trying to get hold of my records from that time to see what they actually were when I was finally diagnosed. I changed surgeries around the end of March and when I asked for my records, the new surgery could only give me what they had as my records hadn’t come over yet!! When I approached my old surgery, they told me they had been sent off and they didn’t have them anymore. Which means that they are sat at the BSC somewhere! 🤷🏻‍♀️🙄

[Chickenlady2009]

Your thyroid medication should never be based on TSH. It should be based on free T3 and free T4. OPTIMAL levels are in upper quarter of range. You need to be OPTIMAL.

Re test T3 and T4 after six weeks, it takes that long to show up in your blood. You may not feel effects of a dose change until 2-4 weeks. Go up in 25mcg increments. This is protocol.

You've been hypo for so long your mineral and vitamins are probably extremely low.

Are you taking betaine pepsin for low stomach acid? ( you most probably have low stomach acid)

You need stomach acid to absorb and digest iron. You also need B12 for this. Do not supplement with folic acid, only folate.

To get vitamin D up you need to supplement with 8,000 iu a day. (That's not a typo). Take vitamin D3 with vitamin K2 to direct vitamin D away from tissue and into bone.

Without adequate iron and vitamin D you cannot convert T4 into T3.

Magnesium deficiency prevents your body producing vitamin D from sunlight. You should supplement. Magnesium deficiency doesn't show up in blood tests.

Sorry for your plight.

I know this is a lot of info to take in.

[LuluCops in reply to Chickenlady2009]

Hi Chickenlady2009, thank you for your reply. I can’t get my GP to titrate my dose AT ALL so I can’t go up at all, even though I know I desperately need it. The only way I can think of getting around this is to buy L-T4 over the counter along with NDT and see which one I’m more suited to?? I am very tempted to do what many people have done on this forum and bin the NHS Endos and GP’s when it comes to my thyroid and B12d as they just seem to be making me sicker anyway!! xx

[Chickenlady2009 in reply to LuluCops]

I don't know what LT4 is. If you can buy thyroid replacement hormone and pay for private blood tests then do so. Do not ditch the B12 and the vitamin D!

You need a full iron panel done.

Adding T3 which is in NDT does not always work for everyone.... But it's worth the try. Remember TSH is always very suppressed when adding T3 and therefore not a reliable measure.

You always need to test free T3 and T4.

Some one on this forum knows where to get tests and thorough meds independently. Maybe start a new question asking for that

[LuluCops in reply to Chickenlady2009]

Thank you, I definitely won’t be ditching the injections or the D3!

L-T4= Levothyroxine, apologies.

I know where to get the blood tests done, it’s just the buying of the meds privately that I am not sure of, I do have a separate post for this running already.

It seems like I was also right in them just wanting to make me sicker too! I’ve just had a letter back today from my GP, after requesting a referral to an endocrinologist at a specialist centre of excellence saying that they can only see out of area patient if it is a ‘tertiary endocrine issue’ and she doesn’t feel I need it because my problem doesn’t seem to be a tertiary endocrine issue!! Well without looking at my full thyroid panel results- how the hell would she know!!??

I’m fuming!!

[Chickenlady2009 in reply to LuluCops]

OMG. This is wrong. So sorry. Good luck with sourcing L-T4

[LuluCops in reply to Chickenlady2009]

Thank you. Glad it isn’t just me over reacting!!

[SlowDragon Administrator in reply to LuluCops]

Suggest you put up new post requesting information by private messages only on where to get Levothyroxine without prescription

[Hidden]

Hi Shelley I know this is an older post but wondered if you had any luck getting your vision problem figured out. I have been severely undermedicated as you were and night Vision in my left eye is deteriorating. If I'm in a room that's not very bright or at night driving I have blurry vision in left eye especially around things that reflect light like street signs it's really bad. I see a neuro eye doctor in Jan. I think it is thyroid related from being si undermedicated for so long - and have found a few medical studies that show a connection. Just wondered how you were doing now and any luck finding an answer. Sandy

[LuluCops]

I haven’t had any luck finding out from the medical field what the issue is. However from my own research I believe it has to do with my thyroid as you also believe, it’s gotten better since I’ve began self medicating with combination therapy, and I have optimised my minerals and vitamins. I’ve also noticed though that when my B12 is low or I’ve forgotten to take it, my vision gets worse again.

I hope you get it sorted one way or another x