Stuck with worsening of CFS symptoms and no help

[Jenny583]

Hi, I'm new here.

Have been following you about 3 weeks now. And, can I just say - this forum is a life saver! I am 59.

I just went to see a different Dr in the same practice, as I have got much worse lately.

At first I came upon this site to try and find a solution to a problem that had been plaguing an aquaintance for 31 years. She could not get T3 anymore, and does not get on with Levo. And so is having to think about going back to England even though she has made a lot of friends here in Jersey over the last 45 years.

Here we have to pay £43 to see Dr for 10 minutes. I learned - through you amazing people that TSH is the only numbers that Dr's go by, and long story short, I asked for FT3 and FT4 from my usual Dr,(following advice from friend )as I felt that all my symptoms pointed to low thyroid. As far as I know My regular Dr is the only one here that provides a printout of Blood results. So mid July I had bloods, and the result was that some results were lower than last year. (My usual Dr sends me results after I asked for Parathyroid, and vitamin D as I am bedridden, and I had the symptoms of secondary hyper-parathyroid, which she confirmed and prescribed Calcichew), I had no vit D, and para's were stealing calcium from my bones, she said,and it does hurt! since then she lets me do the diagnosis LOL!

So then the Hashimoto's friend asked me to try a Dr that does not push Ad's etc, and also to bring the appointment forward so she could test him through me . So I tried a male Dr that agreed to allow me HRT a few years ago. He was clearly in the TSH camp though, and suggested St Johns wort, and a website called - Oh dear, I can't remember the name now, Patients something? but I think it is a 'big pharma' sponsered thing. Anyway he said I was a classic case of chronic fatigue syndrome, and suggested that I learn all about CFS, and then threw me out!

I had severe thyrotoxicosis thoughout my youth and wondered if the over treatment that I eventually got may have caused some damage, as I have gone down hill since, like hypo?. I asked if the biotin that I took the day before may have skewed the results of the test thyroid tests in June, but he evaded ,and was clearly out of his depth. I have lost the last remaining thread of hope, and now am wondering if I should order some NDT from America.to try. T3 would be impossible to get here, as would blood tests, so I could maybe try NDT for me and my Hashi friend?

My symptoms are severe fatigue, insomnia excercise intolerance, dementia, (though I was too young to be tested for that) but worse than my late Mother who was brain damaged from pernicious anaemia, and Myxedema ,I am nearly bald now, hair, skin and nails, itching, reverberating head ringing, dizziness and falls, loss of balance, and rapid pulse on standing or moving, swelling, and bloating, weight gain, feet and leg pain, pins and needles, numbness, Bad brain fog, worsening allergies, back and joint pain, memory loss, low temperature, sensitivity to cold etc, and the loss of ability to spell and on and on etc... ( male Dr today suggested hot showers- but after hearing that My hot water and central heating got stolen, changed that to cold showers, mumbling something about brown fat !) LOL. I seem also to use up reserves of whatever energy I have for just a couple of hours work, and pay for it for the next 7 days - in bed. I also have Coeliac or Gluten intolerance which also runs in family.

I take B12 sublingual, B1, zinc, folic acid, biotin, coconut oil, apple cider vinegar, Magnesium Malate, vitamin c, electric blanket, heat lamps, and 800ug vitamin D and calcium (prescribed), also various prescribed things. I also live on 80% widows pension. no other income.

The results from 14/3/17- that puzzle me.

Adjusted Calcium 2.17 mmol/l (2.20 - 2.60)

Glomerular Filtration rate 89 (>90)

TSH 1.50 (0.50-5.00) no T3 or T4

B12 297 (200 -680)

And from 19/6/17 - 9AM

TSH 0.87 (0.50 - 500)

Free Thyroxine 13.1 (10.1 - 25.0)

Cortisol 429 (9:00hr 125-630)

Folate 11.8 (2.5 - 17.0)

Anything here stand out?

Thanks.

[SilverAvocado]

In thyroid terms, you really need the freeT3 and perhaps freeT4 (free thyroxine) as well as the TSH to know where you are. Is a mail order, pin prick test a possibility? I guess you're in the US, so I can't suggest any. The only clue from these results is that TSH is high-ish. Most people do well with it under 1, often suppressed down to nothing. Your freeT4 is also quite low. The rule of thumb is you want it in the upper quarter, possibly right at the top of the range, yours is close to the bottom. So you probably have room for a dose increase or two, and can expect not to feel too well.

I can't interpret all your other results, but the B12 is glaring. Yours is very low, you want to be in the 500-ish area to be well. Low B12 can cause symptoms similar to hypothyroid. If you've been taking the B12 for more than a few months what you are doing isn't working, and you will likely need a more serious approach - it can take months or years to raise low levels.

I don't know enough to advise, but you will find it throughout the forum. You need to make sure you have the right from of the vitamin methylcobalamin or a name like that? And probably a fairly high dose. Hopefully someone will come along who can advise, or you'll be able to find it elsewhere in the forum.

[Jenny583 in reply to SilverAvocado]

Thank you Silver Avocado! Sorry - I had very bad brain fog last night. I forgot to mention that the FT3 from my June This year test was 4.6 (4.3 - 8.1). I also forgot to say that my latest test, (this year) had b12 over range, at 692 H (200 -680).

Those sublinguals sure do work! needless to say that the cheap ones didn't... also forgot to say I take selenomethione and co q10.

It makes me wonder what my B12 was before I started supplementing B12 and folate! and wonder what neuro damage may have been done, esp given how ill I was 6 years ago, but that's another story.

I asked a Dr in my practice if the low in range T's could point to central hypo, but he didn't understand, and became very condescending and then hostile. BTW, The tsh was 0.87 or under 1, which is much lower than the 1.5 of the year before, so probably not hashis then. He was about to diagnose Hyper, so I lectured him on thryoid basics, and pointed out that I had had Thyrotoxicosis, and storm, and that GP's had probably destroyed my thyroid.

I very much doubt that I would be able to get another FT4 or FT3 test via GP., That is if I havn't been barred, It looks like I burnt my bridges there, and will have to concentrate on the usual route of testing by symptoms with vit pills. Next stop I think will be B6 and B3 My late Mother was very short of B6 and folate and B12, She had lifelong PA, and did not get B12 injections or calcium or folate or thyroxine or IF till she was in her 70's! She was crippled with osteoporosis, and lost over 6" height. She died at 79. also I was told by that Dr yesterday that I had an inherited osteoporosis? If I had known that I could have treated myself OTC when I was 40, ( they only treat very elderly men on steroids and at least 3 broken legs here!) I would have taken D3 and calcium. The Dr I had back then had just come from UK, and very green - and was about to write a script when she noticed that she couldn't help as I was way too young, I was also too young at around 45 to be assessed for Alzheimer's( which she believed I had,) she discovered. So I never got diagnosed with anything but depression. And each A D made me very ill and I had to stop suddenly. So I always assumed that my debilities were either depression or withdrawal which also made me very ill, in a different way, But at the time I didn't know about withdrawal, and neither did the GP's.

I spent over £1000 on GP's each time the drugs poisoned me , only to be told that it was high BP, it was always much worse at night, and I could not lie down, or sleep at night. After I got a BP monitor, I noticed it was worse at night, and when I tried to lay down, so I got 2 hours sleep during day semi propped up, short cat naps , I was very cold and stayed in clothes 24/7 and was ever ready to dial 999, if seizures got very scary. Never did see the Neurologist though, and couldn't afford to remind the GP's that I was promised one, also they never took blood, not that I could have afforded the blood tests. You have to pay for all the tests you have done here, but tests are not encouraged! each time I stopped AD's my BP and pulse went very low, and I would lose 1.5 stone, I was able to hold down only bananas and kiwis, with a lot of ginger.

Sorry to ramble on like this, but as I have few "lucid" days and have not posted anything before, (I am quite new to computers/internet) I should make myself clear while I can, I think. BTW Jersey (channel islands) near France, but on a different planet, The Dr's here are a commercial business, so are all private and are called 'Partners' + they are not accountable to anyone! and you pay Thrice through tax (,which is on everything), SS, and directly.

I should have pointed out that I have never been offered treatment, and only know that I had a failing thyroid by chance - when my then GP about 15 years ago said "ah at last, it looks as though your thyroid has finally packed up, it took long enough", or words to that effect. She was of that school that believes that the thyroid, cholesterol, and High BP are all connected. But after that she always, every year said that it had suddenly started working again. I suspect that the labs moved the goalposts, and as Jersey is 50 years behind every other planet - they had just "discovered" TSH and levothyroxine!

So that is why I am obsessing about thyroid, I guess.

BTW, finger pricks are not an option here, and a blood test through - I think it is Blue horizon, would be £200, including the nurse, I think they are the only one that do Jersey though, cheaper through the only GP here that does give out the printout, and she only charges me £55, (She is new, and has only sent the 2 printouts so far),even though it takes her 10 minutes to simmer the only vein I have (its in my hand) and 10 minutes to draw it... but I would have to wait another year for that and also find out what the symptoms of bubonic plague are etc...

Once again Thanks

[SilverAvocado in reply to Jenny583]

Jenny, I think you're right to be thinking about the thyroid. Your numbers are scraping along the bottom, and you will feel enormously better if you get optimally medicated. Lots of your other health problems will also be improved. Thyroid hormones are needed by every organ, tissue and cell in your body, and everything will be becoming sluggish or shit down without it. Cholesterol is very much related, before the blood tests were invented it was used for diagnosis.

What you need is an immediate increase. I guess you are on Levothyroxine. So increase by 25mcg, and then retest in 6 weeks and adjust again. You may need to do this several times as are badly undermedicated.

Have you looked into the finger prick Blue Horizon test? That one you can do at home and send back yourself. Check the ThyroidUK website, as there are two other companies, Medichecks and Geneva that also do the tests to try and find one that will deliver to you.

Many of us on this forum self medicate - buying our own blood tests and medicine from abroad. So you may be better off at least partially going down this route.

[Jenny583 in reply to SilverAvocado]

I have just spent an hour or so posting a reply, it was a masterpiece too. and accidently deleted it when I couldn't post it. in case I cant get this through, I will keep it short.

TSH 0.87 ( 0.50 - 5.00 )

FT4 13.1 ( 10.0 - 25.00 )

FT3 4.6 .( 4.3 - 8.1 )

Vitamin D 93

Adjusted calcium 2.13 LOW ( 2.20 - 2.60 )

Transferrin saturation 21.3 % ( 20 - 50 )

(9AM) after supplementing biotin day before.

Not on any thyroid meds

TA

[SilverAvocado in reply to Jenny583]

Apologies Jenny, I thought you were already taking Levothyroxine.

Without it might be a bit more complicated. Your freeT3 is very low, you'd expect someone with a low T3 like this to have a high TSH, but yours is actually spot on for a healthy person.

This makes me think you have central (also called secondary) hypothyroidism. This means that the main problem is not your thyroid failing, but that your body is not producing TSH (thyroid stimulating hormone), which is the instruction to your thyroid to make more. So because your thyroid isn't receiving the instruction, it doesn't make much thyroxine.

This is something you want investigated, because it means the pituitary gland isn't doing its job and producing the TSH. But it has quite a few jobs in the body, and it might be going wrong with other things, too. This could be the cause, or at least exacerbating a lot of other health problems.

I don't know enough to give you much advice about this. If you don't get some good replies about this, you could try making a new thread and ask specifically about Central Hypothyroidism. This is a lot rarer than Primary Hypothyroidism which is usually auto immune, so hopefully you'd get advice from people who's been down that path.

[SilverAvocado in reply to SilverAvocado]

The next step may be to request a referral to an Endocrinologist. GPs might know nothing about this.

[Jenny583 in reply to SilverAvocado]

Yes I tried that. but I could not get them to budge.

There is only one endo here, and he is in the tsh only camp. People I know have to be referred to him to get treatment, but they can't even get their T3 or T4 tested. The friend with hashis has not had a dose increase in the 31 years that she has been hypo, and now is crippled with worsening symptoms, and daily migraines.

She has been here all her adult life, but is having to thing about leaving all her many friends, and go back to the UK, it is heartbreaking.

If she could only find an affordable T3 option, it would help so much. She managed to source T3 for 5 years until recently,( and was transformed while on it )when the fallout from the T3 ban went global.

It was she who asked me to research T3 for her on line, while I am laid up with a broadband and chromebook. And she and several others over the years told me I was Hypo, but I did not know about the faulty testing methods.

I only got the FT3 and FT4 tests OK because of my history of Thyrotoxicosis way back in my youth.

That male Dr yesterday was all set to kill my thyroid again, based on the low tsh alone!

Friend asked me to to try him because she has had it with her usual practice, and wanted a guinnepig! to source a new GP that would work with her.

If she can't even get a dose increase of Levo, and only gets told she should take sleeping pills like he said all 80 year olds do, (she is only 70), then I don't stand much chance. And there are no private endos here.

At least in the UK you are allowed to see your lab reports, and everything is free.

[SilverAvocado in reply to Jenny583]

Members on the forum may be able to recommend places to buy T3. Again you can start a brand new thread, ask people to private message you with where they buy theirs.

Very difficult with no Endos available. With going private it is possible to have phone appointments. I am thinking of trying to find one in the USA as I also have an unusual condition.

[shaws in reply to Jenny583]

There is also a product, the very original natural dessicated thyroid hormones which were in used from 1892 up until the British Thyroid Association stopped prescribing and put levothyroxine in its place.

Before the blood tests along with levo were brought in we were diagnosed on clinical symptoms alone and given NDT on a trial basis and if we improved we were hypo and took it for a lifetime.

Many buy their own now. Maybe that would suit you and may be easier to source than T3 at present. It contains, T4, T3, T2, T1 and calcitonin.

There is one non-prescription NDT called Thyro-gold and was developed by a doctor who was an Adviser to Thyroiduk.org.uk before his death. His widow now runs this business.

There are also other NDTs which can be sourced and you'd have to put up a new post asking for sources asking for a Private Message to be sent to you.

I shall give you the link to Thyro-gold anyway as it is not against the rules as it is a non-prescriptive product.

naturalthyroidsolutions.com/

It is important vitamins/minerals are optimum. B12 and Vit D and should be optimum. They are are pro-hormones and B12 should be towards 1,000 to try to prevent dementia and if low you should supplement with Sublingual methylcobalamin B12. You should have B12, Vit D, iron, ferritin and folate checked. All have to be optimum.

[Jenny583 in reply to SilverAvocado]

Thanks Silver avocado

Yes I totally agree, in the post that I deleted, (when I was locked out,) I mentioned the problems that I had with cortisol and very high BP, and neuro problems 6 years ago, I also had kidney problems, stones? + I paid for scans and Xrays, and was told that there was something visible on the back of my kidneys but none of these things were investigated, but all that was so expensive, and I just ran out of money. I was buying expensive beds and mattresses at the time as well, because my bones hurt so much from( I now know the rickets) etc, no one tested my vit D and calcium levels or even bloods. and they never did send me to the neuro, which would have been free, even though they said they would.

In the post I deleted I suggested that all low T,s along with the nature of my decline point to central/secondary Hypo, and how the above could cause damage to the pituitary Hypothalmic Thyroid axis, but the DRs will have none of it. Also I have just seen that there is evidence of a link to falling TSH, B12, folate, and B6 connected to dementia. My late Mother had all these things, and now so do I, it appears.

So I have done all that I could to get investigated, and have hit a brick wall, it seems to me that all I can do now is assume that I have high homocysteine levels, and try and get that down somehow, to try and halt any further brain damage.

Thanks so much. I will take your advice, and post on central hypo this evening. God Bless you all...J

[silverfox7]

I'm assuming you mean Jersey in the Channel Islands? Some one on here posted a while back about lack in help in Guernsey and because you are physically handing over money to see axictor it must be more gutting to find you are still very much in the dark. I suggested to her as she had several months before her next blood test to make enquiries about e dos on the south coast of England or may be even France as a day trip visit may be possible as well. I'm sure we will have members in both places who may be able to help

[Jenny583 in reply to silverfox7]

Thanks silverfox7

Yes I knew a millionairess who got Armour thyroid a few years ago, but I just assumed that it was a different brand of Thyroxine though. I think though that she must have had it sent over, because they don't I now know prescribe it here.

She also went to France to get her bowel cancer removed just in time, at the age of 80! and it only cost her £6000, They told her hear that there was nothing wrong with her! but she does speak french, which I don't.

The only Endo here is a bleep, and he only does diabetes. I saw him after I got severe vit D secondary Hyperparathyroism. He told me I should eat calcium in( food only) pref with lots of gluten, and just supplement Vit D! he also told me the names of every English supermarket (that we don't have here) and get childrens orange juice with added vitamin C, which of course you cannot get here...

I am not well enough to go to the next parish, never mind abroad! even if I had the money.

Also every penny I had was stolen, just £7 left not long ago. + I get 20% less than an OAP, and half my income goes on GF food, and absorbable nutrients.

I was thinking experimentation /self medication maybe is my only option, but first nutritional support, then maybe a blood test next year, then we'll see, does that sound like a good plan DYT?

Would it be still possible to trial T3 via internet, (also for my hashis friend) or is that now a closed avenue?

Many thanks

J

[silverfox7]

It I s possible to self medicated but you would be foolish to do that without learning all about it first. STTM ( Stop the Thyroid madness ) book is often quoted for this and then you can post asking for info but remember to ask people to reply by private messages only as the forum does not allow this to be done openly.

[Jenny583]

Role of vitamin B12, folate, and thyroid stimulating hormone in dementia: A hospital-based study in north Indian population.

sorry new to computers, don't know how to do a link on chromebook.

[humanbean in reply to Jenny583]

The full paper can be found here :

ncbi.nlm.nih.gov/pmc/articl...

[Jenny583]

Thank you. All of you.

I had looked at the excellent sounding product that you mentioned shaws. I had it saved and then came across a much cheaper Thai product with very good reviews, also in USA, but with free delivery, on a big shopping site. It also had excellent reviews. Though I was not able to create the account in order to check if they would ship to Jersey, (jersey was not in the line-up of countries they ship to.

But I will cross that bridge when I come to it. Meanwhile I have ordered some more Vitamin B12 1000 mcg Methylcobalamin, also B6, and( B3 with chromium) to add to the rest.

Also STTM book is on the way.

I must say that I feel a lot better. I think that is partly down to taking the B vits again after a week without. But I believe that it is mainly the help, support and education from you wonderful people on here. without which I would have probably got very depressed again.

So a big Thank you.

It will be interesting to see what the CFS/ME sites are about, as advised by that GP I trialled the other day, and if their ME/CFS forums have a different perspective to the "official" sites?

, So now I need also to find out if the prescription calcichew-d3 forte is being absorbed - given the low serum level, and if the brain excitotoxins in it are addling my brain faster than the malnutrition...