Desperate and need help

[MrsRaven]

I am getting a bit desperate.

Last year, after a bout of illness and rt3, I got myself right, and was feeling as well as I could have expected. I was 9st7lbs and could wear all my nice clothes. Still wasn’t completely right but then, are we ever. I was on 100mcg levo and 25mcg of T3. Pulse around 75 resting and bp around 110/60.

In August/September we had a dispute with our building society who said that we owed them a lot of money and threatened to repossess us. also they had conveniently lost our deeds and mortgage agreement when we changed from endowment to repayment. Our solicitors refused to help us fight them and so we ha to remortgage, which should have been easy but because it’s an old, unregistered property, (because our solicitors didn’t do their job) it took three or four months and was extremely stressful. In fact the building society was about to issue court papers for repossession.

By the end of it, I was retaining fluid like nobody’s business, and in spite of my TSH, FT3 and FT4 looking reasonably good (ft4 was mid range, and FT3 was upper third) I was feeling distinctly hypo and beginning to look it as well. I was still gaining weight. My skin dry, scaly and peeling, eyebrows and hair falling out etc. No energy and sweating like a pig at the slightest exertion or stress.

I have now gained 13lbs, most of it around my middle which is size 18 where the rest of me is a twelve. I have low bp, when I get the slightest stress I swear buckets from my head and torso and get palpitations though to an extend I can control those with breathing. My bp drops and I can nearly pass out. It only has to be an argument or even thinking about washing my hair or some simple task. It’s starting now, writing this. I increased my T3 by a quarter of a tablet and my eyebrows are growing back, but nothing else has changed. My ankles and lower calves swell up by night time and the only way I can get relief is take diuretics. Not surprisingly I am also depressed.

I was like this about 4 years ago when under great stress - my brother had died and there were family and money problems. I went into T3 and was fine.

I am on a low carb/high protein high fat diet which normally suits me well. The endo says if I don’t want to get fluid retention don’t drink!

Can anybody suggest anything I can do. Warning, if it involves buying expensive supplements or expensive tests I can’t afford it. I can just about maintain what I am doing now

Thanks

[greygoose]

Have you tried increasing your salt intake? Sea salt or Pink Himalayan, of course.

PS, your endo is an ass!

[MrsRaven in reply to greygoose]

I know she is. She won’t prescribe t3, she expected me to recover from hyperparathyroid on the same dose of D3 that made me deficient and though my B12 was bottom of the range she said it didn’t matter. I considered the salt increase. I use pink salt for cooking but I didn’t know how effective it would be or how much I’d need. I probably need electrolytes too but stuff like dioralye contains aspartame which makes me vomit. But why the sweating and the near collapse under stress. I was attending to my snakes The other night, something which I love doing, was concentrating on doing something and ended up bathed in sweat and nearly passed out twice. This has never happened to me before so badly. I couldn’t even breathe. Also I still have clear hypothyroid symptoms, although I’ve increased my t3. I was on Ikaros for several months and that messed me up, but things improved again when I went back onto Unipharma

[MrsRaven in reply to MrsRaven]

I should add that I get blinding headaches. Like migraine only over my whole head. They usually start in the afternoon

[Angel_of_the_North in reply to MrsRaven]

I found Tm or vedic meditation (mindfulness is too much effort), adrenal supplements (I use adrenavive III) and lots of rest eventually got my adrenal symptoms under control - but it wasn't quick. Also take MSM (10g), salt (2.5g) and lemon juice (1/2 lemon) in water (1/2-3/4l) every morning. Still have to be very careful if you do anything physical. Actually throwing up usually helps me, too.

[MrsRaven in reply to Angel_of_the_North]

I have oral lichen planus so anything acidic can be problematic for me. I use Solfeggio meditation which I find is very soothing, especially the 528 frequency. I have been taking rhodiola complex but have run out and need to get some more. But it’s the turn of t3 this month. Unfortunately taking it easy and getting a lot of rest isn’t necessarily an option, I have a busy life and often have physical work to do. We have a biggish old house that’s on three levels with a garden like an allotment. I used to grow all our veg but recently haven’t even been able to prune the shrubs. Also the recent bad weather has knocked me for six. I feel the cold very badly.

[SilverAvocado in reply to MrsRaven]

If you're very active now, finding a way to reduce the activity can help a lot. Search your life for things that can be crossed off the list, this is a real skill to do, as we do so much because we feel we should, and we might be a lazy or less good person if we don't.

If you can cut out 10 or 20% of your weekly or daily tasks, and spend that time lying down or resting as best you can you will feel a huge benefit. There's no point in doing all these physical things if they're making you ill!

[MrsRaven in reply to SilverAvocado]

It would mean getting rid of my animals which are the only reason o get out of bed in the morning. I’ve long since given up with the garden

[MrsRaven in reply to MrsRaven]

I have lost so much, over the last five years especially. My brother killed himself, my youngest son, who seemed like my only ally, has left home, I can no longer focus to paint like I used to and and I can’t garden. We used to volunteer on the West Somerset railway, but they kicked us out because before I was on T3 I became too ill to guarantee when I’d be able to go down. I used to love driving but concentrating for anything but the shortest trips is exhausting. I am not about to give up the last remnants of my life to this vile illness just because the damned NHS won’t treat me 😡

[SilverAvocado in reply to MrsRaven]

Definitely it is always difficult to cut things out. But I always ask whether your health is more important. Especially if it could go downhill any further.

I definitely know how bad it is to give things up, as I was largely bed bound for several years, and when that happens you lose everything - even being able to wash and dress myself. It really makes you realise how many things are optional!

I've noticed in this thread you've said that many of the things that would help you get better are impossible for you. I would urge you to have a serious think about whether you can get past some of those barriers, and why it is that you're turning down a lot of the advice. Getting better can be a lot of hard work, and can involve sacrifices or big changes to how you live your life. Some of the things you used to enjoy and value can become impossible But of course that also opens doors as well, especially when you start to see symptoms improve.

[MrsRaven in reply to SilverAvocado]

I don’t garden any more, my Guinea pigs are gone - I used to breed and show them. I can no longer go for long walks with the dogs. I used to breed and show them, and do obedience and working trials training. Even most of them are gone. I can’t do ceramics any more because I have no grip, carpal tunnel syndrome and no feeling in the tips of my fingers. I find it hard to focus on anything for long including painting and cooking. I’ve lost so much that I’m just not prepared to lose any more.

The worst of my stress is made by other people who just don’t understand. If I give up the only interests I have left there will be no point in even getting out of bed in the morning. That’s all!

[MrsRaven in reply to MrsRaven]

I don’t actively turn down advice. I think about it and see if it’s relevant before I implement it. One mans meat is another mans poison and everybody has their own way of looking at things

[Angel_of_the_North in reply to MrsRaven]

I used solfeggio tones as well (and other healing sounds) and found them helpful, but TM knocks the socks off even that. I drink my morning drink with a straw and the combination of salt, MSM and lemon doesn't register as acidic - there is so little lemon and the other ingredients counteract it.

[MrsRaven in reply to Angel_of_the_North]

Even very diluted fruit juice makes the roof of my mouth sore. Then all I can eat is mush

[Angel_of_the_North in reply to MrsRaven]

Try it without the lemon then - tastes vile BTW.

[greygoose in reply to MrsRaven]

Try the adrenal cocktail : Half tsp salt, half a tsp cream of tartar, in a glass of orange juice. That gives you the vit C, sodium and potassium.

When did you increase your T3? By how much? What is your actual dose at the moment, and have you had any labs done since you started that dose?

[MrsRaven in reply to greygoose]

I don’t like orange juice, unfortunately.

I increased my T3 recently by 6.25mcg. At my last bloods in November last year I was on 25mcg my TSH was suppressed T 0.01, my FT3 was a fair way up towards the high end. For me to be well it needs to be right at the top. My ft4 was around halfway up. I am feeling better in some ways. In November I was getting palpitations all the time, and my blood pressure was hitting 80/40 quite often but my pulse was fast. That’s settled better now. I was also suffering badly from orthostatic hypotension which is not so bad as it was. But the fluid retention problem remains. I haven’t had bloods done again as the surgery won’t do them so soon and I can’t afford to pay atm

[greygoose in reply to MrsRaven]

Lemon juice, then. Or just plain water. It's not that important. It just takes the edge off the taste of the salt. Plus vit C helps with absorption. I was even taking it in pineapple juice at one point.

It would be a lot easier if you could give us the actual numbers and the ranges, instead of trying to pinpoint the level that way.

[MrsRaven in reply to greygoose]

Just the thyroid ranges or all of it?

TSH 0.01 (0.34 - 5.60)

Ft4. 11.9. (7.9 - 20.0)

FT3 6.3. (4.00-6.60)

[greygoose in reply to MrsRaven]

So, your FT3 was 6.3 before you increased your T3? It's probably over-range by now, then. Your FT4 is nowhere near mid-range, but that's OK and expected because you're taking T3. Have you had your antibodies tested?

Over-treatment can also cause water retention. But, it's true it could be something to do with your adrenals, which is why I suggested the adrenal cocktail. Adrenals need plenty of salt. They also need a lot of vit C.

Have you had your vit D, vit B12, folate and ferritin tested?

[MrsRaven in reply to greygoose]

I have only just increased my T3, in the last couple of weeks, because I had hypo symptoms like dry scaly peeling skin, eyebrows and eyelashes falling out etc. The eyebrows and eyelashes are better but the skin is still not good. I was on this dose last winter, my FT3 was at the top of the range and I felt fine till I caught the bug that laid me out. I am always better when my FT3 is right at the top of the range. This has happened since the stress of the remortgage, not helped by suddenly having to switch to Ikaros which did me no good at all.

They won’t test my VitD because it was done 4 years ago 🙄.

My ferritin was done a year ago, 85 (11.00-307) marked normal no action.

It had actually increased as has my haemoglobin count as I was on Spatone but have run out and can’t get any more till next month, so trying to eat an iron rich diet.

B12 was 1224 (120-625) I had been supplementing. This is marked normal no action too

Folate tested a year ago 23.3 no range. Normal

Thyroid Peridoxase 1 (0.00 - 8.00)

The one issue I should take up, I feel, is my serum alkaline phosphatase was fine a year ago, now it is over range 140 (25-110). It hasn’t been mentioned as an issue though it’s flagged up. This seems to happen now and then

Ditto my serum urea 9 (2.50 - 6.60)

Last year I was recovering from a virus, I had tests done by medichecks and had rt3. My other results were all over the place that’s why I got them rechecked in November but the surgery wouldn’t do the ones that were done in March

[MrsRaven in reply to MrsRaven]

The only tests they’ve done this time (nov ‘17) apart from liver function U’s and E’s, and FBC are TSH, FT3 FT4, GFR which was 89 no range, magnesium which is good, calcium smack in the middle, and potassium likewise.

[greygoose in reply to MrsRaven]

There's a difference between right at the top of the range, and over-range. You are probably over-range by now. If you felt well with it over-range, that would be one thing, but as you still feel bad, that's quite another.

Was your rT3 high? If so, it was probably caused by the virus. Everybody has some rT3, that's perfectly normal.

I don't think your serum alkaline phosphatase is high enough to indicate a problem, but it can be caused by so many things.

Serum urea is to do with the kidneys, did they check your kidneys?

So, the one thing they're not testing for is your adrenals - which is normal. GPs don't know much about adrenals so they rarely test for it. So, just in case that's where the problem lies, try being kind to your adrenals. Your B12 and folate appear to be good, but try taking a B complex anyway. Adrenals like B vits. Try the adrenal cocktail, as I suggested. Take lots of vit C - several thousand, but build up slowly. Make sure you get a high protein breakfast as soon as you get up. Go to bed at the same time, and get up at the same time every day. Make life easy for your adrenals, and see if things improve.

[MrsRaven in reply to greygoose]

I have only increased my t3 a couple of weeks, and don’t feel too bad in myself as such now. I have wondered if my adrenals are not good, that might stop me from absorbing T3.

Just that this fluid retention is getting me down, depressing me. I take multi b vitamins, Jarrow b right, and 1000 vit C, I take my thyroid tablets with water about 7.30 a.m., then about 10 a.m. I have three scrambled eggs cooked in butter and coconut oil, or sometimes bacon and eggs, maybe an avocado or a banana too. I take the rest of my T3 in the afternoon about two hours before dinner. I don’t eat many carbs. Mostly the dietdoctor.com diet.

A lot of my trouble comes from stress I think. I live in a very stressful situation atm. My husband is quite a contentious character when he feels like it, and won’t take responsibility unless he’s forced to, and we have a very sick dog that we will have to say goodbye to soon. I bred her myself and that makes it harder. We need a lot of work done in the house which we can’t afford to pay somebody to do. We’re hoping to move to something smaller and easier to manage, so the work will have to be done if we’re going to get a decent price for the house.

I often don’t sleep well, I wake feeling tired. I meditate to try to bring my stress levels down, and that helps me sleep. I have oral lichen planus which flares up at times like this. It’s often a measure of how bad things are.

My bp is 105/59 atm, pulse 75, temp 97.9f

[greygoose in reply to MrsRaven]

Well, of course, all that would add stress to your adrenals. You can take more than 1000 mg vit C. I take 5000 mg.

That's a good breakfast, but what time do you get up? You need that protein as soon as you get up. If that interferes with taking your T3, you could always take your T3 two hours after breakfast. Or, try taking it all in one go.

Have you ever tried taking curcumin (termeric)? That's supposed to be good for water retention.

[MrsRaven in reply to greygoose]

I get up at about 9-9.30. I rarely feel like moving before then. I’ve been looking at turmeric. It might be an option. I was originally advised to split my T3 dose. So that’s what I’ve done. I take it when I wake up so that i won’t forget it. I have a habit of forgetting the afternoon dose, shed ending up taking it mid evening after dinner, which is usually 5-6pm.

[greygoose in reply to MrsRaven]

OK, it was just a suggestion. Plenty of people do take it all in one go. It has its advantages.

[MrsRaven in reply to greygoose]

Yes, I can see that it would help me because I wouldn’t have an afternoon dose to forget and also wouldn’t interfere with my vitamins and minerals

[greygoose in reply to MrsRaven]

Very true.

[Saya85 in reply to greygoose]

MrsRaven

I would add magnesium to that cocktail too !

Especially great for anxiety and blood pressure issues and fluid retention (Epsom salt baths may help with that too- magnesium based)

although your bp being quite low is Odd

[MrsRaven in reply to Saya85]

I take magnesium L-threonate at night, though my serum magnesium level shows as being in the top third of the range. I found it helped with leg cramps

[phoenix23002]

Mrs. Raven. This is just a guess but your situation sounds much like an adrenal problem? I wish I was more learned about adrenals but, alas, I am not. Please take a few minutes to read this page. stopthethyroidmadness.com/a...

It gives some simple at-home tests that might help you dx a problem. You also may have to bite the bullet and take the saliva cortisol test so that you can know for sure that adrenal exhaustion or adrenal stress is the problem. Here in the states, some sufferers supplement OTC 1% hydrocortisone cream to try to even out their cortisol levels.

greygoose's suggestion to take 1/4 - 1/2 tsp of natural celtic or pink salt a few times a day in a glass of water is sound since our adrenals run on salt (assuming stressed adrenals are the problem). It might help your headaches also. You might google 'adrenal cocktail' and see what comes up. Lots of info about these 'cocktails'. Make sure the salt is natural.... not commercial table salt.

If you read the stop the thyroid page, about 2/3rds of the way down, there is a paragraph that states that when cortisol/adrenals are out of whack, extra estrogen may be made by the body. If that is the case with you, (estrogen dominance) inexpensive, OTC natural progesterone cream is very helpful. When adrenals are stressed, the body will 'swipe' hormones from everywhere, trying to compensate. The natural progesterone supplement can sometimes help in that situation. Getting ourselves straight can be such a mess sometimes... and often it is a 'one step forward, two steps back', totally frustrating.

[humanbean]

If you need dioralyte or some similar product, but struggle with the unnecessary added ingredients then you can make your own out of ingredients you have in your kitchen. There are probably quite a few recipes, some more sophisticated than others.

Google for "oral rehydration therapy" and add "recipes", "home made" or "ingredients" to your search.

[MrsRaven in reply to humanbean]

I have been looking online so far without much luck 😞

[humanbean in reply to MrsRaven]

who.int/cholera/technical/en/

rehydrate.org/solutions/hom...

en.wikipedia.org/wiki/Oral_...

geniuskitchen.com/recipe/or...

Because they are meant to be easily made at home with cheap ingredients they usually have no flavourings. You might struggle to swallow them.

If you really want a commercial product, but don't want to pay the high cost of dioralyte you could go to (or phone) supermarkets with pharmacies and ask the price of their own brand rehydration salts. (Sometimes they have them, sometimes they don't.)

[MrsRaven in reply to humanbean]

Thanks humanbean. I’ve investigated supermarket and pharmacy electrolytes and they’ve invariably got sweeteners in them. Even sports electrolytes seem to. My gp prescribed dioralyte with my diuretics but because it’s got aspartame in I couldn’t use it.

[humanbean in reply to MrsRaven]

In that case I think your only option is to make your own.

[MrsRaven]

Thanks for the suggestions. I felt it wasn’t just thyroid. Although I am sure they are also implicated. I have a salt craving and some adrenal symptoms. Like the headaches etc. I will have to save for tests I think because I can’t exoect any help from the gp

[humanbean in reply to MrsRaven]

Salt cravings are usually found in people with low cortisol.

Weight gain around the middle is usually found in people with high cortisol.

This is the problem with cortisol - the symptoms are usually confusing and it isn't wise to guess which issue you have, you need to be tested, and the saliva cortisol test is the best test there is. You would need to make sure that the test you buy also includes a test for DHEA.

At time of writing :

The Genova Diagnostics UK and Regenerus cortisol saliva tests do include a DHEA measurement.

The Blue Horizon Medicals and Medichecks cortisol saliva tests don't include DHEA.

There is no advantage (that I know of) to paying for more than 4 saliva tests in a day. I know that some packages include 5 or 6 saliva samples.

Some people may get useful info from doing a saliva test in the middle of the night, but I don't know of any companies that offer this option in the UK. And even if someone had such a result I wouldn't have a clue what was an optimal result during the night.

[MrsRaven in reply to humanbean]

I’ll Need to save some money up. I’ve just bought some more T3 😞

[humanbean in reply to MrsRaven]

Well, I would post a sad face but buying some T3 deserves a smiley face

[MrsRaven in reply to humanbean]

😆 yes. Thankfully no problems with it atm

[Rapunzel]

Sounds like an adrenal problem to me Mrs R. I wish you better health as the days go by and send hugs x

[MrsRaven in reply to Rapunzel]

Thanks. I am pretty sure it is, and of course it will rebound on my hypothyroid 😞

[Hidden]

Hi Mrs Raven. I want to add some info re fluid retention that isn't often addressed to patients. For more info I'd google '. 'potassium and salt ratios'. I have thyroid issues, and also a-fib which includes fluid retention issues. I believe many causes/illnesses can contribute to fluid retention so although I learned this from having cardiac problems it applies to fluid problems regardless of origin. For sodium and potassium to work properly they have to be in balance. I think sometime ago I read that the RDA (US) recommendation re a proper potassium to sodium ratio is 4 to 1 (4 x as much potassium as salt). Some of the holistic-style doctors I routinely follow online suggest this is too low and recommend doubling or even tripling those numbers. I try to stick with a ratio of -minimum 8 to 1. It can be difficult but certainly I wouldn't go lower than the 4 to1. (I also keep my salt intake low-under1000mg/day) I have had afib since 2011 with the attendant fluid problems and episodes of congestive heart failure requiring hospital stays of 2-3 days to get rid of fluid. About 2-2 1/2 years ago I got serious about my fluid probs and one thing I do is eat enough potassium-rich foods to offset my sodium intake. I have had no fluid retention episodes and no hospitalization for CHF in over two years prompting my EP to say recently I'm in better cardiac shape now that 2 years ago.. A caveat. Get your potassium in food unless you talk to your doc and he specifically prescribes a potassium supplement for you. Supplemental potassium taken indiscriminately can be deadly to your heart but you won't cause harm by getting it in food. BTW don't be surprised if your doctor doesn't give much credence to this nutritional info. There are many excellent doctors but I can count on one hand the number I've had who are knowledgeable about nutrition specifics. Hope this helps. Take care. irina1975 PS. I read where you sometimes have probs with fruit juice, don't like o.j. etc. Not a problem. If you do eat fruits whole fruit is always better than juice which thru processing often loses vitamins and minerals. Also many foods contain good amounts of potassium other than fruit. A baked (jacket) potato is an excellent source of potassium. But you must eat the skin. Google potassium-rich foods and I think you'll be pleasantly surprised.

[MrsRaven in reply to Hidden]

My sodium is low. The gp isn’t interested. My serum potassium was tested last November after this started as being .5 below the top of the range. The main fruit I eat is bananas usually in a smoothie with an egg yolk. I get a fair bit of potassium in my diet, and my potassium ranges have never tested low as they have for sodium