Fluid retention very low thyroid results and ot... - Thyroid UK

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Fluid retention very low thyroid results and other symptoms

MrsRaven
MrsRaven

Hi everyone. It’s a long time since I was on here. I have been on around 70mcg of Unipharma T3 for quite a long time now, with no levo, and doing well. Unfortunately I can’t get it now. My last order didn’t come through and a get no reply from them.

I was ill at Christmas and new year with something resembling Covid. At the start of lockdown I was ill again with similar symptoms but breathing problems too. It took a long time to get over it.

Because I haven’t been able to get my Unipharma I trialled Tiromel T3. I took it for a month and I haven’t been well since, even though I’m back on what’s left of my unipharma. I felt very hypo, but also was experiencing POTS, gained 8lbs of weight in two days putting 6” on around my waist, with my ankles and feet swelling, my lower legs at times, and the skin on them very sore. I can barely walk sometimes and can’t stand wearing socks or shoes. I also have skin rashes and headaches, alternating between slow heart beat and palpitations, plus arrhythmias, though recently those have improved. I have mood swings and often feel black depression which isn’t typical of me. My cognitive function has suffered.

I’ve had the result of my 4-point saliva tests for adrenals done recently which suggested possible Cushings but also possible Addisons (!?) I know that in past years I have suffered from very low daytime cortisol followed by extremely high night time cortisol. Since last autumn I’ve had a tremendous amount of stress not just through Covid and lockdown but also family and financial matters.

I’ve recently had my absolute worst set of thyroid figures ever.

My doctor has checked FSH and LH, which are normal and is now checking my early cortisol which is always low.

If I put up my results would someone care to help me by commenting on them please? I’m at a stage where I really don’t know how to manage this or how to proceed. All I know is that life is becoming unbearable.

My doctor has limited understanding of thyroid though he does listen and recognises that some of us need T3.

TIA

101 Replies
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I have to add that I have hardly any physical or mental energy, no motivation, can’t be bothered to eat and my temper is getting worse and worse

Scrumbler
Scrumbler in reply to MrsRaven

Are you quite sure that you are MrsRaven and not Scrumbler? ☹️☹️

I’ve had the result of my 4-point saliva tests for adrenals done recently which suggested possible Cushings but also possible Addisons (!?)

Cushings is very high levels throughout the day. Addisons is very low levels throughout the day. So, I don't see how the test can suggest both. Are you saying it's very low in the morning, and high at night? That is a typical Adrenal Fatigue pattern. :)

MrsRaven
MrsRaven in reply to greygoose

Yes that’s what I thought. My levels are different to the first tests I had. They are on the low side a lot of the time, but my early cortisol was in the Cushings range apparently and my lower results later on in the Addisons range. I’m thinking this is having an impact on my thyroid

MrsRaven
MrsRaven in reply to MrsRaven

I got that wrong, my early cortisol was in the Cushings Range

MrsRaven
MrsRaven in reply to MrsRaven

Not thinking. Addisons

MrsRaven
MrsRaven in reply to MrsRaven

It’s shooting up and down. As though my body is reacting in an extreme way to stress.

greygoose
greygoose in reply to MrsRaven

I think it would be best just to post your results, because this is getting complicated. :)

MrsRaven
MrsRaven in reply to greygoose

I’ve dug out my reading glasses

8am 6.6 mm/L ((range 6-21)<possible Addisons

12noon 5.77nm/L (range 1.5-7.6)

4pm 1.5nm:L (Range 0-5.5)

Midnight 1.5nm/L (Range 0-2) <possible Cushings

This was from Medichecks. Even my GP saw that the early one was low.

In some ways it’s better than the last test. My night time cortisol was way over range.

greygoose
greygoose in reply to MrsRaven

Well, as far as I know, Addision's is below range cortisol at every reading throughout the day, whilst still following the 'normal' curve. And Cushing's is the opposite. So, whoever wrote those comments is a right clown that knows nothing about adrenals.

Your first reading is low, granted, but your second one is pretty good. The 4 pm one is a bit low, but the midnight is not too bad at all. So, neither Cushings, nor Addison's, just classic Adrenal Fatigue results.

MrsRaven
MrsRaven in reply to greygoose

The fact is though that whether I’ve got adrenal fatigue or not the NHS won’t recognise it, and it’s quite possible it’s affecting my uptake of thyroid hormones. I simply wrote the results as I saw them. They’ve been worse and I was very ill then as well. It took me two years to get it right. But my ankles and feet swelling abc being very painful a lot of the time has never happened before. Also my GP said TSH is suppressed on T3. But like I told him, not when my FT3 is below range

greygoose
greygoose in reply to MrsRaven

No, that's true, the NHS does not recognise adreanl fatigue. But, I'm afraid I'm not very sure what you're asking. I thought you were asking if you had Addison's or Cushing's. And, you don't. Is there another question?

MrsRaven
MrsRaven in reply to greygoose

Yes what could be causing my thyroid hormones to be so low, could it be related to possibly having had Covid which my gp thinks I did, could it be a knock on effect from my adrenals, and stress Which lockdown hasn’t helped. What could have suddenly caused me to have mega fluid retention and not be able to shake it, to the point where diuretics don’t really help? What can be causing the Skin rashes and the horrible pain in my feet, where my skin is so sore that I can’t bear shoes and socks on most of the time. My gp hasn’t got any answers. I have all the symptoms of being hypo that I had before I was First treated. It even hurts concentrating to type this. I’ve had fluid retention before. I had a GP friend then who had retired, and he was an A&E consultant at one time. He believed in adrenal fatigue and helped a lot and with advice, but he died suddenly two years ago and I’m missing his help. I’m sorry if I’m not making myself very clear. I’m struggling to even put sentences together

greygoose
greygoose in reply to MrsRaven

I think we're all very stressed with lockdown. I haven't been out for nearly five months, and I wonder about my sanity at times. I think I had COVID last November - yes, it was in France at that time, because I live in the French epicentre of the disease. And, it does take an awful long time to recover. I wouldn't say I was really over it yet. So, it's bound to have an effect on our adrenals, I would say. I'm not sure that this is even the right time to be doing tests. I think we just have to be kind to ourselves and get a much rest as possible - which isn't hard in lockdown.

Did you not make a note of the advice you were given by your GP friend to help your adrenals? Can you not remelber what he told you to do?

MrsRaven
MrsRaven in reply to greygoose

Yes I remember and have been trying to relax, meditate, self hypnosis to cut stress, eat a diet that supports adrenals but we have a lot of private stress that is way above the normal atm that I can’t cope with. The constant pain in my feet and not being able to walk isn’t helping. Not being able to guarantee I can get things I need as well as worrying about what will happen when my T3 runs out. Also not being able to get into most of my clothes. Being hypo is making me very depressed as well. Something I’m not used to. Also not being able to remember things, words, etc. I just want to feel normal again, like I was this time last year

MrsRaven
MrsRaven in reply to MrsRaven

Money problems and my husband having investigations for a lump in his throat. Not helping

greygoose
greygoose in reply to MrsRaven

No, that wouldn't help, I know.

Your adrenals need lots of B vits, vit C and salt. Also a high protein breakfast early morning. If you can give them that, at least, it might help.

MrsRaven
MrsRaven in reply to greygoose

I have a good breakfast. No caffeine plenty of protein and low carbs. I drink plenty of water. I think I’m doing all the right things. But nothing seems to be helping. My feet swelling and hurting is driving me mad. Also my clothes are cutting me in half. I spend most of the day in pjs with no socks or even slippers. I’m having early cortisol tested next week. My gp said as my LH and FSH are normal for my age he thinks my pituitary is ok. It was suggested it might be central hypothyroidism, as my TSH is always under 1 no matter what I’m taking and was even before I was medicated. It took me ten years to get a trial of levo. The endo told me last time to stop drinking to control the fluid retention. My friend said she’s crazy

Scrumbler
Scrumbler in reply to MrsRaven

Most doctors are crazy. It’s a pre requisite of their qualification 😎

greygoose
greygoose in reply to MrsRaven

It was suggested it might be central hypothyroidism, as my TSH is always under 1 no matter what I’m taking and was even before I was medicated.

Well, that certainly does sound like Central Hypo. But, Central Hypo is two things: Secondary Hypo and Tertiary Hypo.

Secondary Hypos is when there's a problem with your pituitary. Well, if your other pituitary hormones are ok, then perhaps it isn't that.

Tertiary Hypo is when there's a problem with your hypothalamus. The hypothalamus tells the pituitary to release TSH. If the hypothalamus isn't telling the pituitary to release TSH, it won't do so. So it sounds very much like you could have a problem with your hypothalamus. And, that wouldn't affect the other pituitary hormones.

But, even if you do have Central Hypo, it doesn't affect the treatment for hypo. The only treatment is still thyroid hormone replacement. So, it's probably not that important to find out.

OK, so you're having a high protein breakfast. But, are you taking the B vits and vit C? Do you get enough salt?

The endo told me last time to stop drinking to control the fluid retention. My friend said she’s crazy

I agree with your friend! But very few doctors understand the mechanics of it all. It's all to do with salt, not water. If you don't have enough salt in your system - and remember adrenals need a lot of salt to recover - when the water leaves your body, the salt goes with it, leaving you with even less salt in your system. So, the body tends to hold on to the water, and not let it go, so that it can hold on to the salt. If your salt intake is high enough, you won't need to hang on to the water.

MrsRaven
MrsRaven in reply to greygoose

This has only been happening since I was ill, and then went onto the Tiromel. I wasn’t too well after the Christmas/new year thing but I was picking up before lockdown and I showed Covid symptoms just on lockdown. It’s taken me a long time to get back from that abc I hadn’t succeeded when I think the Tiromel messed up my thyroid levels even more. I’ve been so stressed out since Covid and I’m scared what’s going to happen next. I don’t even feel safe going out unless there are no people around and we live in a holiday area where we’ve had no infections till the tourists arrived. It’s cause and effect all the time

greygoose
greygoose in reply to MrsRaven

Well, I take Tiromel. I've taken it for a few years. Before that, I was taking Greek T3. I don't find that Tiromel is any worse.

MrsRaven
MrsRaven in reply to greygoose

I think this was a bad batch but that doesn’t help me now and it’s made me wary of using it again

greygoose
greygoose in reply to MrsRaven

You didn't answer the question I asked below: so did you stop the B complex for one week before the blood draw?

MrsRaven
MrsRaven in reply to greygoose

I did answer it separately but lost my answer and really was so tired I couldn’t face going through it again. I hadn’t taken any supplements before the blood draw because I forgot. Also the test didn’t include vitamins and minerals

greygoose
greygoose in reply to MrsRaven

Sorry you lost your answer, but I wasn't enquiring about your vitamin and mineral levels. Taking biotine can skew blood test results, so I was asking if you stopped your B complex one week before the blood draw to avoid the biotin skewing your results. Because, frankly, that FT3 result is not credible.

MrsRaven
MrsRaven in reply to greygoose

Ah? Well I’ve been warned that if you are on B supplements you should stop them before testing for B vits but not about biotin.

greygoose
greygoose in reply to MrsRaven

Biotin is a B vitamin. It's B7. And it's usually to be found in a B complex. So, did you stop your B complex one week before the blood draw?

MrsRaven
MrsRaven in reply to greygoose

Yes because I simply forgot to take them. For longer than a week to be fair. I have to keep reminding myself to take my supplements, these last few months.

greygoose
greygoose in reply to MrsRaven

OK So, do you have the same problem with taking your thyroid hormone?

MrsRaven
MrsRaven in reply to greygoose

No. I have it beside the bed with a glass of water and it’s the first thing I see when I wake up. I keep my pill box with my thyroid tablets on me and I set my alarm on my phone to remind me to take the later dose.

Scrumbler
Scrumbler in reply to MrsRaven

What supplements do you take?

MrsRaven
MrsRaven in reply to greygoose

Well I’ve definitely got all my hypo symptoms back and then some, I’m even losing my hair and eyebrows. Depression, anxiety, irritability, impaired cognitive function, mental confusion weight gain, fluid retention etc. I’m going to ask my GP if he’ll fit in FT3, FT4 and TSH with my cortisol text if o can. If I can’t I’ll have to do it privately

greygoose
greygoose in reply to MrsRaven

That sounds like a good idea. But, don't forget to stop your B complex one week before the blood draw. :)

MrsRaven
MrsRaven in reply to greygoose

I know the key to it is reducing stress and I get what you’re saying about the hypothalamus because it had occurred to me ages ago that something wasn’t right. But getting anything done about it is another story.

greygoose
greygoose in reply to MrsRaven

Yes, but there's nothing that can be done about it. Be it a pituitary problem or a hypothalamus problem, all you can do is take the thyroid hormone replacement - T3 in your case. There's no other treatment.

Scrumbler
Scrumbler in reply to MrsRaven

You feel like this because you have adrenal fatigue. It’s no coincidence that the checklist of symptoms for adrenal fatigue and low thyroid are almost the same. I find that the strange thing is that even when my blood test results haven’t changed, I have hypo symptoms because I need more fuel in the tank to cope.

MrsRaven
MrsRaven in reply to Scrumbler

Yes but I am also very hypo

Scrumbler
Scrumbler in reply to MrsRaven

You are. I’ve commented elsewhere on your results.

MrsRaven
MrsRaven in reply to Scrumbler

I’ve had adrenal fatigue before but it was nothing like this

Scrumbler
Scrumbler in reply to MrsRaven

I understand completely. Believe me, it is stress related. I have so many traumatic things going on just now I feel as though I’m going to wake up from a coma in hospital. It’s truly vile and I feel for you.

I read a book about Adrenal Fatigue yesterday. Took the whole day as I kept falling asleep. One paragraph stood out:

If you have a problem which is causing you severe stress have three options:

Change the person / issue causing you the problem

Change your own attitude to it

Walk away

MrsRaven
MrsRaven in reply to Scrumbler

I can’t just walk away and I can’t just ignore it because the whole family is involved and it’s our futures at stake. Sometimes I just want to run and keep running. In fact I’ve come very close. But I’ve got nowhere to run to and I’d be worse off than if I didn’t. I can’t even drive my car atm as my feet and ankles hurt so much and a can’t focus.

Scrumbler
Scrumbler in reply to MrsRaven

I have no options either. Too many people to get hurt. I could walk away but the stress of that would finish me off. All I have is hope - that it can only get better.

SeasideSusie
SeasideSusieAdministrator in reply to MrsRaven

MrsRaven

My understanding of how Medichecks report their ranges is

(range 6-21)<possible Addisons - so if your result is less than 6 there's a possibility of Addisons.

1.5nm/L (Range 0-2) <possible Cushings - have another look, is that supposed to be > as Cushing is when there's too much cortisol, and if result was more than 2 there's a possibility of Cushings.

It's a general thing, I don't think they're particularly specific to your results.

My last cortisol tests were way over the range at night, which meant I wasn’t sleeping, but I did get that down under range with turmeric and relaxation. But it was lower in the daytime

Scrumbler
Scrumbler in reply to MrsRaven

It’s a difficult balancing act

MrsRaven
MrsRaven in reply to Scrumbler

Yes. Like walking a tightrope over a chasm lol

Scrumbler
Scrumbler in reply to MrsRaven

Lol 🤣

Scrumbler
Scrumbler in reply to MrsRaven

It is.

I keep reminding people about this, so apologies if you've read this already: if you're taking Tiromel, a large tablet with several different excipients, crunch it to a powder before washing down with water. I have low stomach acid, and I found Tiromel worked much better for me if chewed rather than swallowed whole. It can make all the difference for some people.

MrsRaven
MrsRaven in reply to Hillwoman

It’s no larger than what I was already taking. It contains PVP which is known to cause gastric problems. I don’t know of any other thyroid preparation that uses PVP.

Hillwoman
Hillwoman in reply to MrsRaven

Yes, some people find PVP affects absorption. That's one reason to crunch the tablets to get them through the digestive tract a bit quicker.

The Unipharma (Greece) tablets I used to take were noticeably smaller than Tiromel.

MrsRaven
MrsRaven in reply to Hillwoman

Mine were about the same size. PVP is supposed to attract fluid and aid dispersion

Hillwoman
Hillwoman in reply to MrsRaven

It doesn't seem to work very well! :-)

My blood results

FT4 0.5 (7.9 - 20) usually halfway up

FT3 3.7 (4.00 - 6.60) usually around 6.0)

TSH 0.02 (0.34 - 5.60) usually 0.01 but never higher than 0.75 even on levo

CRP is low, serum urea is over range as is HbA1c. GFH is 83

Antibodies are normal

LH is normal

FSH is normal

MrsRaven
MrsRaven in reply to MrsRaven

I’m on 7mcg of T3

MrsRaven
MrsRaven in reply to MrsRaven

73

greygoose
greygoose in reply to MrsRaven

I think you're probably on 75 mcg. I don't see how you could get a dose of 73. :)

It would have been much better to start a new thread with these results, because very few people are going to see them here.

So, these results were on 75 mcg T3 only?

How long have you been on this dose?

How long a gap did you leave between your last dose of T3 and the blood draw?

MrsRaven
MrsRaven in reply to greygoose

I don’t have my reading glasses and not focussing well. Yes 75mcg is what I meant to type. There was at least 16 hours gap.

greygoose
greygoose in reply to MrsRaven

Well, that a bit too long. Shouldn't be more than 12 hours.

Do you take your T3 the same way you would take levo? Well away from food and other medication/supplements?

Do you take any supplements?

MrsRaven
MrsRaven in reply to greygoose

It’s no different to anything I’ve done before. I take half my dose at 8am with water and don’t eat or drink anything for at least an hour. I take my second dose about 5pm usually and don’t eat it drink after that for at least an hour. Supplements at lunch time. I don’t really take any other medication because since I’ve been on T3 I haven’t needed painkillers or indigestion remedies

greygoose
greygoose in reply to MrsRaven

What supplements do you take? Do you take anything contianing biotin - a B complex, a multi-vit?

MrsRaven
MrsRaven in reply to greygoose

I take B-right multi B, Jarrow pantothenic acid, magnesium bisglycinate, D3 with K2, methylfolate, zinc picolinate, and B6. I also take better you 4xB12 spray. But I do forget to take them sometimes especially recently and my diet hasn't been as good since lockdown. I’m coeliac and drink goats milk. I can’t always get what I usually eat. We only have small supermarkets here and I’ve had to wait weeks for deliveries if I’ve ordered. I eat a lot of eggs, and I eat fish but not fresh as it’s not been so easy to get.

greygoose
greygoose in reply to MrsRaven

OK, so did you stop the B complex for one week before the blood draw?

Scrumbler
Scrumbler in reply to MrsRaven

☹️ Not looking good

Scrumbler
Scrumbler in reply to MrsRaven

How much over range is your HbA1c?

Your FT3 is below range.

I’m a bit confused about why you say that your FT4 is usually half way through range when you don’t take Levo.

To be honest Mrs R, with results like that and adrenal fatigue on top, I don’t know how you’re functioning at all.

I think you need to slowly increase T3=and at the same time do some of the practical and inexpensive things to support your adrenal function. I have severe adrenal fatigue atm and find that having a couple of glasses of salt water during the morning helps - especially the POTS /low BP symptoms.

Did you abstain from caffeine on the day before and the day of the Cortisol tests?

MrsRaven
MrsRaven in reply to Scrumbler

My HbA1c is high enough for me to be considered pre-diabetic. It always happens when my thyroid is low. I have no idea why my FT4 would be as high though it drops when my FT3 is right at the top of the range because then my TSH drops to 0.01. My FT3 is dire but I’m taking 75mcg a day. I don’t want to risk taking more if it’s being blocked my cortisol levels which is possible. I don’t get POTS all the time. Just odd days when my cortisol feels low. My bp and pulse are usually low, but when I get POTs my bp and pulse shoot up When I stand or walk. It’s enough to make me nearly pass out sometimes though my bp isnt that high. The highest it’s ever tested is 140/65. As for caffeine, I haven’t had caffeine apart from the odd coffee or tea once in a while for several years now

Scrumbler
Scrumbler in reply to MrsRaven

I’ve read that cortisol doesn’t block T3. It prevents conversion from FT4 so it’s better to be on t3 only. That said, T3 does raise cortisol so slow but sure.

There is a view that if you increase your meds and then your cortisol sorts itself, you’ll get sudden symptoms of overmedication.

MrsRaven
MrsRaven in reply to Scrumbler

Yes but that’s more if you’re pooling T3 which isn’t the problem I’ve got. With that your FT3 Is high. I’ve watched a lot of Joel Rosen’s videos and he suggests that it blocks utilisation of thyroid hormones in general. There can’t be any other explanation for what’s happening in my case unless I have HPA axis problems in general

greygoose
greygoose in reply to MrsRaven

No, there's no such thing as 'pooling'. It just doesn't exist. The half-life of T3 is 23/24 hours, so it doesn't have time to 'pool'.

MrsRaven
MrsRaven in reply to greygoose

I read on one of the thyroid advice sites about pooling T3 and I cant remember which one it was. It was some time ago and I can’t remember what I was doing last weekend. I tried taking another 6.25mcg of Unipharma and in a couple of days I was having palpitations which scared me so I stopped. That might have been due to something else that was happening. I could try it again and see if the same thing occurs

greygoose
greygoose in reply to MrsRaven

Pretty certain you read about 'pooling' on STTM, because they invented it. But, it really doesn't exist.

Palpitations can be a symptom of under-medication, as well as over-medication.

MrsRaven
MrsRaven in reply to greygoose

Yes I know and also of John cortisol, but I didn’t have them before I increased the dose. Also a couple of years ago I went Suddenly hyper one winter after I’d increased my dose when I’d been hypo. I’d far sooner be hyper than hypo but I’m wary of it happening again. I could try a quarter of a tablet but I’m very wary.

greygoose
greygoose in reply to MrsRaven

I'm pretty sure you didn't 'go hyper', because that's a physical impossibility when you're hypo. You were either over-medicated, or you have Hashi's. But, without seeing your labs from that time, it's impossible to tell which. What made you think you were hyper?

I didn’t have them before I increased the dose.

That doesn't mean a thing. Symptoms come and they go, and new ones crop up all the time. We can't put the clock back, so we may as well go forward, and deal with things as they occur. :)

Increasing by 1/4 as a trial would be a good idea.

MrsRaven
MrsRaven in reply to greygoose

My FT3 was 50% over range and I’d been slightly hypo because I was swapping from Levo/T3 to T3 monotherapy at the time. I was always slightly hypo even on 100mcg of levo and 37.5 of T3. I was probably slightly overmedicated but I had definite hyper symptoms. Tachycardia, heat intolerance, I was outside in a cold easterly wind in just a t-shirt and shorts and didn’t feel the cold. Sweating all the time indoors. So it felt the same to me.

greygoose
greygoose in reply to MrsRaven

OK, so your FT3 went up to 50% over-range, on the same dose that had been OK for you previously? Is that it?

Sounds like Hashi's, to me. Have you had your antibodies tested?

MrsRaven
MrsRaven in reply to greygoose

No I said that id increased My dose slightly because I still had hypo symptoms so I was on 37.5 + 6.25 plus 100mcg of levo. And that’s when I got hypo symptoms after a few weeks and went over range. My antibodies are always low

greygoose
greygoose in reply to MrsRaven

Over-range shouldn't give you hypo symptoms. I don't understand that.

MrsRaven
MrsRaven in reply to greygoose

Well I certainly had them anc was on a higher dose than normal so it makes sense to me.

greygoose
greygoose in reply to MrsRaven

Are you sure you meant 'hypo symptoms' and not 'hyper symptoms'? If your levels were over-range, one might expect you to have 'hyper symptoms'.

MrsRaven
MrsRaven in reply to greygoose

That’s my autocorrect again. I typed hyper and it must have changed it. So I’ve checked this time and it hasn’t

greygoose
greygoose in reply to MrsRaven

OK But, do you realise that you cannot always be sure the symptoms you are having are hyper symptoms, because many, many of them can be symptoms of both hypo and hyper. That's why we need blood done, to backt the symptoms up. So, it's always a good idea to post your results, and ranges, to demonstrate what you're saying.

So, what happened next? Did you reduce your dose? By how much?

MrsRaven
MrsRaven in reply to greygoose

That’s why I had bloods done. I dropped the 6.25mcg extra and went back to my original dose. It took a little while but I went back to how I was before I upped the dose. A bit tired, dry flaking skin specially on my legs and feet, Feeling ok-ish but not right. Not sleeping well. When I had my bloods checked again my FT3 was back in range but lower than before I raised the dose, my FT4 was still low at the bottom of the range and my TSH was 0.05.

greygoose
greygoose in reply to MrsRaven

It sounds very much to me as if you have Hashi's. Even if your antibodies aren't elevated. 20% of Hashi's people never have raised antibodies. So, it's perfectly possible.

Have you ever had an ultrasound of your thyroid?

MrsRaven
MrsRaven in reply to greygoose

No. It took ten years to get at trial of levo and I’ve never officially been diagnosed as hypo. They carried on giving it to me because it made me feel a bit better

MrsRaven
MrsRaven in reply to greygoose

But levo worked less and less well over the years. That’s why I went onto T3

greygoose
greygoose in reply to MrsRaven

Yes, that sometimes happens. Conversion gets worse over the years. And, that's another thing that doctors don't understand.

MrsRaven
MrsRaven in reply to greygoose

The fact that they rarely understand thyroid At all is evident.

When I went to the endo in 2015 I’d been on levo for more than ten years. I was very ill with stress and had undeniable hypo symptoms. My beautiful long silky thick black hair had fallen out and what was left was like chicken wire, I had no outer eyebrows, I was full of fluid, exhausted, dry skin like paper, unable to create, depressed with intense lower back and leg pain which thankfully I don’t have atm and was 25lbs over my ideal weight. All I wanted to do was sleep. I thought I was losing my mind. I’d been on 100mcg of levo forever. My TSH was 0.75, my other results weren’t wonderful but were “in range”. The endo wrote to my GP saying that it wasn’t clear that I was hypothyroid though I did have some “troublesome symptoms” the hell I did! She recommended that my dose be dropped to 75mcg to get my TSH over 1 again.

Also I was diagnosed with hyperparathyroid and nothing was done about it. It was then I first posted on this forum and started taking T3. The result was dramatic. I had private blood tests done and found I also had reverse T3.

I knew nothing then of adrenal fatigue but seeing that we were under great stress at home and my illness was threatening my marriage - largely because I was impossible to live with and my husband didn’t understand why - its pretty reasonable to suppose that it was a factor. Now I find myself in the

MrsRaven
MrsRaven in reply to MrsRaven

Sorry my keyboard locked up and I had to restart my phone

I find myself in the same position, with worse blood results, running out of T3, with less ability to pay for it or for private testing. And I’m really worried about my future prospects.

I’m going to get out all the test results I can find and see if my antibodies have changed over the years.

MrsRaven
MrsRaven in reply to MrsRaven

I am also going to contact the surgery and ask them to retest my thyroid levels, to make sure there’s no mistake, and to consider the possibility of Hashis and an ultrasound. But first I’m going to see if there’s something relevant that I can print up regarding it. Though how it’ll help me when my T3 runs out I’ve no idea

greygoose
greygoose in reply to MrsRaven

Sometimes an endo is the worst person to consult because they are all diabetes specialist who think thyroid is a doddle. They don't learn about symptoms in med school - no doctors do - so have little idea what they are. Tell a doctor your hypo symptoms, and he will want to treat them one by one as separate diseases. You are never, ever going to get a complicated hypo case sorted by a doctor, unless you can afford to see one of the really top men - and there are no-longer any top men in the UK - Dr Skinner died and Dr Peatfield retired. So, that leaves your own wit and knowledge and the forums.

It's a terrible situation, but best to know in advance so that you don't waste too much time going from doctor to doctor.

Yes, you do need those labs redone. Mistakes happen; interferrence in the testing proceedures is possible. The labs think they know all about thyroid - enough to deny us the labs we need - and yet they are incapable of picking up on a possible error like that FT3, and retesting it! Anyone who knows anything about thyroid should have been immediately suspicious of that reading, and redone it. But, nobody does know anything. Only the patients who actually have it.

But first I’m going to see if there’s something relevant that I can print up regarding it.

Maybe you should have started with that, and asked people straight up if they can link you to articles and/or researching showing what you want to prove. If I were you, I'd start a new post, asking just that, because this post has become a bit of a labyrinth - as they so often do - and people stop reading them. Starting afresh is often the only way. :)

MrsRaven
MrsRaven in reply to greygoose

I’ve asked my gp to retest when I go for my early cortisol tomorrow

greygoose
greygoose in reply to MrsRaven

Good. Let's hope the FT3 gets done!

MrsRaven
MrsRaven in reply to MrsRaven

I was still hypo on100mcg of levo and 37.5mcg of t3, so I added in another 6.25mcg of T3 and a couple of weeks later I was suffering from hyper symptoms (it changed it again then as I typed). I ordered bloods from Medichecks and found that my FT3 was 50% over range I don’t Exactly remember where my FT4 was, pretty low anyway. And my TSH was 0.01. I was sweating my eyeballs out indoors and had to go outside to cool down. I didn’t notice the cold at all. But I did get fluid retention. My doctor friend, who died soon after, said I should get my blood tests done though apart from the sweating and tachycardia I felt terrific in myself. After the bloods were done I cut my dose back to where it was before. Then I went a bit hypo again. My gp noted that my FT4 was still low and in spite of my TSH being around 0.05 he told me to up my FT4 by 25mcg. I did and it made no difference

I have been on this dose now for two years. Before that I was on 100mcg levo and 37.5 T3 but never felt well. Up until recently I’ve felt fine on this dose, though had the odd blip if we had a lot of stress. But this has been getting worse since I was ill after lockdown and then changed to the Tiromel. I can barely function today

Scrumbler
Scrumbler in reply to MrsRaven

I think the Tiromel may be a red herring. After all you’re back on your regular T3 now. This is extreme stress causing adrenal fatigue which is made worse not the fact that it’s lowered your FT3

MrsRaven
MrsRaven in reply to Scrumbler

I think it’s a combo of both tbh. Plus possible Covid. The last time I was as ill as this was before I started having the flu jab. I caught a pneumococcal infection and it knocked me for six for months. But I still didn’t have the sore burning feet. That’s a new one

Scrumbler
Scrumbler in reply to MrsRaven

Hypo symptom.

MrsRaven
MrsRaven in reply to Scrumbler

Yes but it can also be symptomatic of other things too. I’ve been very hypo before and never had this

Scrumbler
Scrumbler in reply to MrsRaven

I know but every time I get hypo symptoms I get ones I haven’t had before.

MrsRaven
MrsRaven in reply to Scrumbler

I don’t. But I’m rarely hypo now. When I am I get the usual things, depression, brain fog, dry peeling skin, hair falling out, losing my eyebrows etc. Fatigue snd lower back pain. For how hypo I am I should have all of those, but this time the fatigue, depression, brain fog and fluid retention are the most prominent and this foot and ankle swelling, with the sore sensitive skin, and skin rashes, are something that I have never had before

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