New results & CFS apparently!

[Nickinoo1]

Hi new results I was hoping would show up something but nothing to worry about and certainly cannot say that is why I feel so awful;

TSH 2.6 (up to 5)

T4 12.1 (up to 19)

Serum thyroxine 4.6

Didn't show any T3 results. But interestingly my TSH level 2004 & 2008 were 5.4 & 5.2 respectively and gone up and down since. TSH last month was 2.9. This test above done in the morning.

Dr of opinion my list of symptom are not due to thyroid . Oh and antibodies 203 from 187 last month. I said that not treating Hashi's until thyroid starts to fail is like shutting hate after the horse has bolted but apparently like to let the body work hard for as long as possible. Putting my symptoms more at CFS, IBS, possibly anaemia, menopause. I said I disagreed with this that I thought symptoms were due to thyroid but no.

going to do blood test tomorrow for vitamin levels amongst other things will find out what tomorrow.

Any suggestions? I am desperate now. Nature thyroid should I try this. Second biopsy next week as results of first unable to discount PTC.

[jellynpain]

I'd say try & keep being tested before accepting CFS. Can be a 'we don't know so call it that' thing. I went to CFS/ME specialist who agreed had all symptoms but many more over & above so binned beyond their criteria.

You should have tons of investigations (not just thyroid) before CFS is diagnosed x

[shaws]

These are a couple of links for you to peruse:-

thyroiduk.org.uk/tuk/diagno...

thyroiduk.org.uk/tuk/testin...

If you have high antibodies it is hashimotos and email [e-mail] and ask for a copy of the Pulse online article by Dr Toft of the BTA. I think its question 4 or 5 which relates to antibodies and being given levo to 'nip things in the bud'. I don't think he can ignore someone who was a President of the Royal College of Physician and BTA.

[shaws]

A link for information:

hormonerestoration.com/Thyr...

[Nickinoo1]

Thank you for the replies. I am going to print out and take a whole load of info next time to GP as I feel the symptoms are absolutely to do with my thyroid and the CFS is a 'it will do' answer for a GP that refuses to see past ranges. Apparently joint pain/muscle aches,muscle fatigue/shakes,slow pulse rate,breathlessness,mood swings are nothing to do with hypothyroidism/Hashimoto's? If I have a TSH over 2 Shaws as per the link you gave me is the T4 not high?

I sat and cried from sheer frustration. I have no idea what to do now as more blood tests another week later results and so we go on. I have to pay my mortgage, my family and creatures depend on that. Just at a loss not helped with me picking up a cough and cold. Can you tell I am feeling sorry for myself tonight? Tomorrow is another day right?

[Nickinoo1]

Just wondering whether I am being considered somataform disorder as went to read more on this and my doctor is playing this by the book. He has suggested CFS, fibromyalgia, as likely reasons for my symptoms which are nothing to do with my thyroid per him. Beginning to feel paranoid, and probably coming across as such but truly I am not just want to feel how I did just a few months ago.

[Ansteynomad]

Y our TSH is going up and down and you have antibodies. What is your doctor's problem? You need treatment and/or a new doctor.

They tried to fob me off with CFS. Now my ferritin, B12' vitamin D and folate are optimal and I'm taking 150mcg if levothyroxine every day, I'm at least 90% well.

I'm now on a mission to stop other people falling for the same thing.

[Heloise]

Of course you are hypothyroid and those results prove it as far as I'm concerned. Here's a doctor who lays the blame on doctors who refuse to look at symptoms.

You didn't say which antibody test was done. These videos are only 5 min.

youtube.com/watch?v=3_uaUXi...(Not working as expected?)

youtube.com/watch?v=IIX2Z_i...(Not working as expected?)

[Nickinoo1 in reply to Heloise]

Heloise thank you for the videos - watched them all. If only I got that Dr as my GP! OK so I have this past week gone gluten free after reading many posts here. I will buy vitamins next payday - will be interesting to see if my levels are in range for vitamins too after blood tests tomorrow. B12, vit D, ferrous something or other - iron - sorry brain fog, calcium possibly, selenium, magnesium going to leave as think that plays havoc with CKD - is this on the right track?

I guess if no one in healthcare is prepared to help and I will withdraw rather than be labelled a hypochondriac its going to be down to me. Wow such a wake up call for an ex-nurse!

Forgot to say TPO antibodies and range for T4 as 9-19 so I guess not that high in the range.

[Heloise in reply to Nickinoo1]

I may have responded to one of your posts before so sorry if I'm repetitious. You know it's been interesting what has happened with the calcium recommendations. Did you take supplements before your CKD diagnosis? They have actually reversed the cal/mag ratio. People need much more magnesium than calcium at least if they are going to supplement. All those women taking high dose calcium for their bones have probably done more harm than good especially now that they know without taking K2 (found in spinach and some cheese) the deposits go in the wrong places and that K2 keeps calcium in bones and teeth. I don't know how your ckd condition might accept magnesium but it is very important for hypothyroids since your adrenals go through a lot of it to have a good supply. I keep this on my desktop:

Confirmatory data show that Americans are no exception.(9,10) For instance, American women consume just 68% of the recommended daily intake of magnesium.(11)

Magnesium has long been known as a key nutrient for optimal brain function. More recently, scientists have found it specifically promotes learning and memory as a result of its beneficial effect on synaptic plasticity and density.(7,8,12)

Magnesium works with calcium to modulate "ion channels" that open in response to nerve impulses, which in turn trigger neurotransmitter release. The most important of those channels is controlled by a complex called the NMDA receptor.(13,14) NMDA receptors play an important role in promoting neural plasticity and synaptic density, the structural underpinnings of memory.(15-17)

Magnesium deficiency can cause symptoms ranging from apathy and psychosis to memory impairment.(13,18) Insufficient magnesium slows brain recovery following injury from trauma(19) and in laboratory studies accelerates cellular aging.(20)

Ominously, magnesium deficiency may produce no overt symptoms in its initial stages.(21)

Part of the problem is that it is difficult for the body to maintain sufficiently high concentrations of magnesium in the brain.(8)

For this reason, researchers have long sought ways that higher magnesium brain concentrations might be achieved and sustained.

[gabkad in reply to Heloise]

Wow. Thank you Heloise for doing the reading up on this. I've maintained (privately of course) for quite some time that when someone has excellent vitamin D levels (and I take Carlson vitamin K2 5mg 2 capsules per week... plus really excellent egg yolks also contain K2) plus magnesium (citrate and glycinate), the actual calcium requirement should not be so high because absorption is optimized. I drink milk, some yoghurt and some cheese. I figure that's enough calcium. It's silly these calcium supps when if vitamin D is not optimal and K2 and A are not good, then the calcium goes into the toilet. (literally) But not without causing constipation first. eek.

[Heloise in reply to gabkad]

Hi gab, you probably understood more of that than I did and I can't even recall the source. The doctor I followed on the web brought out the importance of magnesium for so many uses and was the one supplement he always recommended.

Teehee, those calcium supps in the toilet aren't suppositories, right? If they are, you figure that's where they may end up. But better there than in your arteries.

You know the videos I post? I didn't bother with one about vitamin A deficiency because I didn't think it was a real possibility but perhaps it is after all.

youtube.com/watch?v=jR7ZJK1...(Not working as expected?)

[gabkad in reply to Heloise]

Yes, I gently tap the Tomtom around here about vitamin A. My endo actually tested for it the first time I went. There are issues and people just assume that beta carotene IS vitamin A. It's not..

It needs to be checked just like vitamin D, ferritin and etc.

Thanks for the magnesium boost. People with atrial fib should try it for sure. And to help sleep. (or take an Epsom salt bath, of course.)

There's a really fabulous multivitamin mineral supp, Carlson Nutra Support Diabetes. A person would still need to take magnesium and iron. But this has everything else in it. The label says 2 capsules per day with food. Unless a person is severely depleted (and I know diabetes and hypothyroid can reduce absorption plus it has cyanocobalamin instead of methyl, so probably taking a B12 sublingual is still a good idea) this thing is great. It's not sold in stores though. Only on line.

carlsonlabs.com/p-208-nutra... On line supplement stores sell it for cheaper than the manufacturer's suggested retail price. A lot less.

I recommend it for friends who are type 2 or borderline type 2. They report tremendous increase in energy. They are all hooked on it now. I have to smuggle it into Canada for them..............sheeesh. It's a labour of love.

[Heloise in reply to gabkad]

Oh yes, I've used Carlson. They have a wonderful vitamin E product but whew the price but every once in a while I splurge.

That is really loaded, isn't it? You don't need much else.

Have you tried Arginine at all? I'm giving it a trial and at times I think it is making a difference.

[gabkad in reply to Heloise]

I don't take any concentrated amino acids. To my way of thinking, it is imbalance. I eat meat, fish and seafood. I don't feel well otherwise so maybe that's the amino acids in action?

Recently I paid $40 canadian (just before our currency took another dive) for 120 capsule bottles of the Carlson product. I know it's a bit pricey but it's got everything in it especially K2.

I take their 4,000 IU D3 in cod liver oil gelcaps. Excellent for both vitamin A and D. The Solar D Gems. I think the company is excellent. They've been around since, I think, 1965 and have an FDA approved facility. (NO I do not work for them! I wish I did though. They seem to quietly go about their business.) I take their vitamin K2 as well. But when it comes to other vitamins, I just get them from food.

Recently I have been adding Chaga to my boiled tea leaves in the morning. Yes I boil my tea. It's quieter that way. No whistles of kettles. I think that is making a difference. One of my friends in Alaska sent me a bag of ground Chaga mushroom. He goes out and collects all sorts of stuff. I'm always leery of health claims for esoteric stuff. But after ignoring it for a few weeks, I added some to my boiled tea. I've been using it for 3 weeks and I think it may be giving more energy. I feel better. Sourcing it locally is going to be very expensive though. I told him I'll use it up and then see how I feel afterwards. He's the worst drug dealer ever. Gets a person hooked on something and then tells you he can't source more...... these mushrooms grow on birch trees. They grow slowly and after they are cut off they don't grow back. So looking around here for Chaga is probably a fruitless exercise. We have birch but we also have Chaga hunters.

[Heloise in reply to gabkad]

Carlson is cheaper than it is at Iherb where I order. It was the E-Gems I used and looks to be much more reasonable on your website.

Never heard of Chaga. Very interesting. I'll check the next birch tree I see. Are you sure you aren't his guinea pig

Yes, boiling, that's the way the English do it, right?

Dr. Weil always said that amino acids breakdown so are probably are useless but I

don't know if that's true.

[gabkad in reply to Heloise]

LOL! No, I'm not the guinea pig. He's been using Chaga for years (he's also a hypo like us).... his dad drinks it and other friends do too. I'm actually quite late to the party.

I thought the English steep their tea. Indians boil it. I'm neither. I just like quiet in the morning and Ahmad English Breakfast tea (loose leaf) tastes as good to me as tea can possibly taste to a childhood coffee drinker......... oh alas I can't drink coffee anymore. I love coffee. It does not love me back.

[Heloise in reply to gabkad]

Nice chatting with you, let's talk again sometime.

[Heloise in reply to gabkad]

I just read up on Chaga....unbelievable. May reduce cancer, anti inflammatory, antioxidant, wow.

Amazon has all forms of it...extract and chunks. I can see why it gives you a boost.

[Nickinoo1 in reply to Heloise]

Does it taste ok?

[Heloise in reply to Nickinoo1]

I have no idea how it tastes but there were two side effects listed and one was blood thinning.

[Heloise in reply to Nickinoo1]

Being a nurse, maybe you realize how little importance is placed on nutrients by physicians. Understandable that they learn more about disease than they do, health

[MULLIONAIRE]

NICE admitted in June this year that patients diagnosed with CFS/ME suffer "dangerous neglect". I believe this diagnosis is being used by the medical profession when they do not understand people's confusing health problems.

It is time thyroid patients got their GPs to understand that the NICE guideline 53 issued in 2007 and now their 'Pathway' document for the guideline states categorically:

THYROXINE IS ONE OF THE TREATMENTS THAT IS NOT TO BE GIVEN TO A PATIENT DIAGNOSED WITH CFS/ME.

Therefore anyone who takes thyroxine should visit their GP and explain the diagnosis of CFS/ME should not have been given. If you have been left with unresolved health problems you should ask them to refer you to the appropriate specialist.

It is only by standing up and being counted that we will stop the medical profession giving CFS/ME as a diagnosis. The NHS needs to provide patients diagnosed with CFS/ME adequate medical care, otherwise it is a serious abuse of our human rights.

[Nickinoo1]

Hi thanks for that info. I think for me the thing that bothers me is that my symptoms are on the thyroid symptoms list at thyroid .org but not recognised as anything to with thyroid by GP therefore conclusion is it is all in my head or somatoform and needs to be given a 'somatoform' condition label - med profession talking not me - such as CFS which is a physical condition they treat with CBT! I am neither hypochondriacal nor imagining my symptoms and whilst I have blood tests today for vitamin levels and another biopsy on my nodule next week where they cannot discount PTC I am at this time looking to get away from the NHS as quickly as possible and try to help myself. It has done my self confidence an absolute bashing. I was expecting help from medical profession stupid me.

[humanbean in reply to Nickinoo1]

You have three choices :

1) Accept what the medical profession are telling you, and continue to suffer.

2) Fight the medical profession and try to make them accept that you have health problems that they can treat and they aren't all in your head.

3) Give up on the medical profession and treat yourself with the aid of forums like this one.

I've been through each of these steps myself. I switched from choice 1 to choice 2 and back again, over and over again for decades. It's only in the last couple of years that I have moved to choice 3 - I just wish I'd done it earlier. I'm better now than I have been for a long time. I still have a long way to go, but I would never go back to either choice 1 or choice 2.

[Nickinoo1 in reply to humanbean]

Hi humanbean. Yes I do agree with that. Today I had blood tests for B12, ferritin, GFR, white cell count, coeliac autoimmune, glandular fever, amongst others I cannot remember. I did ask for all blood test results for thyroid and saw my notes for a test I mentioed in 2004 TSH 5.4 with comment mildly elevated, normal for patient, patients does not need to know!!! I could have had treatment then and not be where I am at now?

Will look to see if there is a decent health person in Lincolnshire/ Notts area and see if I can get an appt but in the meantime will go the self care route too.

[BeansMummy in reply to Nickinoo1]

Blimey, Nickinoo, the comment "patient does not need to know" defies belief, and is appalling. It makes it sound like an end-of-care plan. You definitely need to get print-outs of all your blood test results in future.

I have Hashimoto's and my TSH was similar to yours a while ago, my GP would not sanction an increase in my levothyroxine as I was "in range", despite an increasing catalogue of symptoms again. When I finally saw the endocrinologist, who was thankfully a different one to the one I have had to see for ages, she actually wrote to my GP stating that we should be aiming for a much lower TSH, with a target of 0.5 - 2.0. She acknowledged to me that I probably wouldn't feel too great if it was as high as 2.0, but needed to put some sort of reference range in writing to the GP!

[Nickinoo1 in reply to BeansMummy]

Yes my challenge is getting any treatment at all before being saddled with a somatoform tag of some description. I don't suppose you are anywhere near me in Lincolnshire? Your endo sounds fabulous. My GP last night told me he would refer me to another doctor - an endo I asked - no a rehabilitation doctor! Swear to god at that point I just clammed up. I have a thyroid surgeon procrastinating about my thyroid goitre and that GP - odds are not good are they!

[BeansMummy in reply to Nickinoo1]

A rehabilitation doctor?? What on earth is one of those. It must be something to do with that end-of-care package they have decided you need. That would be funny if you didn't feel so unwell My apologies, my sense of humour is something that is obviously being affected by my dodgy thyroid.

Unfortunately, no, I am nowhere near Lincolnshire. It took a while for me to realise that the endo I had been seeing (and the few before that) didn't really seem to know much about Hashimoto's, and it was me only dragging my husband to appointments and her having to listen to him that made her begrudgingly agree to do blood tests as recommended by people on here (vitamin D, etc). There was never any acknowledgement that any of my problems could be related to the Hashimoto's.

I have only seen this new one once, but she really did seem to be on-the-ball. She is quite senior, but I have such a jaded view of endocrinologists generally that I feel I need to reserve judgement until I see her again. I told told her that I had recently gone gluten-free because I had heard that it might help reduce antibodies, she was fine with that. She expressed concern (in writing to my GP) that I had never been tested for coeliac disease!

[Nickinoo1 in reply to BeansMummy]

Well I have just had that test too for coeliac so watch this space but also glandular fever which they join to CFS so back to that old chestnut.

A rehabilitation doctor is someone who does CBT and something like - can't remember exactly - graded physical therapy all related to CFS/ME. There is GP saying I have put all down to thyroid but equally he's pinning everything to CFS. Good luck with your next endo appt I hope she upholds your good impression for your sake.

[Nickinoo1 in reply to BeansMummy]

Btw a sense of humour is much appreciated and my end of care plan is well underway

[BeansMummy in reply to Nickinoo1]

[shaws]

Just for info. More on CFS especially the Dark Chocolate.

thyroiduk.org.uk/tuk/resear...

[Nickinoo1]

Hi Shaws you are a font of knowledge. Interesting the FNA for CFS but thinking chocolate of any sort but most particularly dark is a very good idea.