Thyroid UK
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HYPOTHYROIDISM? LYME POTS & CFS!!

HYPOTHYROIDISM? LYME POTS & CFS!!

Hi there I'm new ro tbe group.

I have the following diagnosis

ME/ CFS

Pots- postural tachycardia syndrome

IBS Acid reflux

weak lyme positive on nhs test England but they won't say yes i def have it but have been exposed.

Recently had genova thyroid tests.

Please can anyone interpret?

Also my ferritin keeps dropping and I am back on the iron.

Thanks in advance!

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Oops just realised the pic is not clear...

TOTAL T4 is 45 ---- below range.

TSH 2.97 "Within range"

FT4 12.9 JUST IN RANGE... 11.5 to 22.7

FT3 3.2 JUST IN RANGE... 2.8 to 6.5

FT4: FT3 RATIO is 4.0 out of range.

Reverse T3 is 0.30 range- 0.14 to 0.54

my antibodies are normal

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Welcome to the forum, Lizkate36.

TSH >2 indicates the thyroid gland is beginning to struggle and your FT4 is low in range with FT3 low in range too. It looks as though you are becoming hypothyroid but NHS won't diagnose and treat until TSH is over range or FT4 below range. I think it would be sensible to retest within 6 months.

Thyroid antibodies are negative for autoimmune thyroiditis (Hashimoto's).

Supplementing 100-200mcg selenium is good thyroid support and may help delay progression.

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Your Hypothyroid ....its not ME /CFS

Hypothyroid trashes

Ferritin

Folate

B12

Vitd3

Vit c

And much more besides

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Wow! I had been suspecting this you know! I was right all along. DAMMIT!

In my initial illness I was 100% bedridden with a TSH of 5.3 and low T4 and T3 on NHS

but was told I am "normal" / "within range". That was in 2004.

I have been on a long health journey. My health has been up, down, up down ever since!

FINALLY I am getting more answers and treatment! How do I get my Vitamin C tested?

I just wonder if all of it is contributing to my POTS then!

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Definitely test vitamin D, folate, ferritin and B12. These are very often too low when hypo. (Which these results show you are.....or certainly heading that way)

Acid reflux is classic hypo symptom and due usually to LOW stomach acid

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics plus fermented foods like kefir and sauerkraut too

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Thanks for reply. Yes my Vitamin D was never tested until I asked in 2015!!! Been unwell since 2003. Bedridden 2004. This is crazy!! I had a lot of problems with my throat in 2004 in particular. It causes me a great deal of anxiety the acid reflux. It took them a decade to properly diagnose acid reflux! I felt like I had sharp stabbing pain in my throat, tight throat, closing up of throat, throat muscles not feeling right etc!! It is just bloody awful. Been the worst symptom as well as the fatigue, dizziness etc.

If the reflux is usually due to low stomach acid then why would the camera they stuck down my throat show redness? That confuses me!

Thanks so much for all the links! I am on probiotics already and have sauerkraut in the fridge :) will get some bone broth asap!

I get a lot of neck tightness too - would this be a hypo symptom as well? It seems to flare up in the cold and/or when I have overdone things.

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You’re in exactly the same position I was in eight years ago when a GP and two endocrinologists told me I had CFS/ME. Your TSH would usually be much higher with thyroid hormone levels so low, but somehow it is out of step as mine was. With thyroid hormone levels that low, you are most definitely hypothyroid in my book, but as others have said, the NHS will wait until your TSH gets above range, which in a case like yours it may never do. Knowing what I know now, and going from my own experience (and I’m a historian not a doctor) I’d get your vits and mins sorted and then self-treat, otherwise you could be waiting for years.

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This is INSANE isn't it?! To be told we have ME/CFS when it is our F*****g thyroid!!!

I am so angry about this -- I have lost years to this illness and relationships as well! :(

People do not realise how much this affects us!!! I am just so outraged!

I think others I know with "ME" probably also have hypothyroidism. If it goes undiagnosed for 20 odd years would the person have really bad depression?? I know someone who has been unwell with "ME" that long. It is just so awful and I want to help them!

MY TSH was 5.3 a year ago and I have been cutting out gluten and dairy which seems to help my IBS somewhat. Perhaps it has lowered the TSH, unless it is some of the herbs I am taking for Lyme which I believe could have triggered hypo.

My TSH was also 5. something in 2004 when my bad health had gotten worse, as it all started in 2003 with a bad neck and some fatigue.

I am definitely NOT waiting for NHS. I am getting treatment NOW! I have waited years for this...!! Thinking I would never get better!

I show a high need for magnesium from an organic acid test and a need for NAC.

I have chronic low total body glutathione status, detox and antioxidant status.

And a Urea cycle overload (ammonia toxicity)

I am under a herbalist / functional medicine doctor who suggested this test. My mitochondria are fine - which as she pointed out means I do not have typical "ME" haha!

Unbelievable!!!!!!!!! Was told I do not need CoQ10.

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Hi there you all sound so knowledgeable and some seem to be in the same situation as me. LiZKate36 I really do feel for you! I wonder if you all could help me to understand what route i should take for investigation. I have had symptoms that could be hypothyroidism for a year now. GP did a blood test for thyroid, electrolytes, cortisol, hormones, blood count last summer & said all normal. Despite going back at least 10 times with other weird symptoms like rampant muscle twitching all over and internal vibrations gp have refused to retest. I know my symptoms could be either hormonal, adrenal, lyme or bart or possibly even POTS ......problem I'm having is gp wont test me further because everything came back normal. I'm thinking about buying tests from medichecks.com but have know idea what to buy. i just feel im getting worse, and very weak with no help. GP doesnt seem to have a clue how to investigate further or just wont. What referrals or test could I request from my GP for investigation ? I know Lyme and bart are pretty much impossible to get test on NHS there must be possibilities the NHS could help me explore? Last time i went my GP mentioned (didnt say i had) but said "usually in these kinds of cases we say Fibromyalgia....we see a lot of that." I kind of got the feeling she implied that when tests come back normal and patients keep moaning we just tell them its fibromyalgia. If you come back again I will tell you you have fibromyalgia...... I know theres something woring with my body, I just wish i knew what tests would show it so that I could possibly get some help. Thanks All x

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Hey. Firstly I would get them to test Ferritin --- if it is below 80 then it is not optimal. Mine keeps dropping! So need to keep supplementing iron. Ask for B12 tests - not just blood serum... get them to do MMA and homecysteine tests as the blood serum is NOT reliable to detect a B12 deficiency. I ONLY just found this out! :( look at your MCV on your Full blood count-- if this is raised it is an indicator of low B12.

Muscle twitches can be Lyme indeed. I have had them. You could ask the GP to test lyme. My advice is LIE to get the test. Say you went to a Lyme area and could therefore have been exposed. Or that you remember a bite or a tick. They will not test you otherwise.

Or you could go on the AONM website and order via that - Armin labs ~Germany for lyme and co infections tests.

Not sure what else to suggest but go on the Thyroid uk site if you are in UK.

They got loads of information, I tested with GENOVA for a full thyroid panel.

Always ask for print outs of your blood results so you can see for yourself!!

Good luck!

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Hello Lizkate36,

The NHS GPS are doing their best with the financial constraints, knowledge and understanding from the training they have had.

Armin labs are the gold standard for testing Lyme. However you’ll find it challenging to have that result accepted as the NHS Test isn’t reputed to be as accurate.

The most important reading Ive found to be is the reverse T3 result as it lets you know if the inactive T4 conversion to active T3 is being converted effectively. You’re still in range thankfully. If not something is blocking it like a stealth infection. Suzy Cohen pharmacist wrote a good article (you’ll find it on her website) on this recently.

I found the following tests to be the most helpful.

Diagnostic Laboratories GIMap (gold standard test that identifies DNA of toxins and unwanted passengers)

Sandwell laboratories Vitamin D3 Test

Great Plains Laboratory Organic Acid Test

Focus on doing everything you can to lower inflammation through diet, lifestyle and environmental interventions. You might ask your GP for a H pylori breath test, your homocysteine and CRP levels to be checked.

Carefully watch and limit all sugar intake as unwanted passengers love it as well as our other vital nutrients!

The GIMap is worth every penny as it categorically tells you what is amiss in your gut and therefore your immune system. Your adrenals will be in fight mode with stealth infection/s so support them I’ve found ashwagandha and/or rhodiola to be good. You’ll need to know what you’re fighting before supplementing.

After checking your vitamin D3 levels you might need to supplement but don’t forget to add vitamin K 2 to keep calcium in the bones and not arteries. Of course sunshine is a bonus.

Check out aldosterone steal and that will probably enlighten you to you blood pressure anomalies.

Minerals such as magnesium and zinc need to be monitored.

Things to look out for puffy bags under the eyes and nail ridges from malabsorption.

I’m working with a Functional Nutritionist who has been a rock. PM me if you want a contact.

Best Wishes

For a speedy recovery and I hope you find this of help.

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Hi there,

Thank you for replying! I shall PM you as well. It is always good to be in contact with others on a similar health journey!

I am also working with a functional medicine doctor / herbalist. I just changed herbalists!

I have had the Organic acid test recently and it showed my need for magnesium is high and that I need NAC - N-acetylcysteine. It was a GENOVA test and most other things showed no abnormality although the herbalist picked up on some high markers in her interpretation.

It says Urea cycle overload (ammonia toxicity) and Chronic low total body glutathione status, detox and antioxidant status!

Vanilmandelite marker and high reverse T3 apparently means adrenal support is crucial.

I saw my GP today and he is going to test my D3 and the MMA and Homocysteine B12 tests! Only because I showed him research I found on the NHS website stating that the serum B12 test is not sufficient in showing a B12 deficiency! Ha! The serum test showed 500 last time but in the past when my POTS began it was 200's. I have heard that in Japan people get B12 injections with a B12 serum of 500! I wanted the Active B12 test but hoping these other tests will suffice! I stumbled across information indicating that B12 deficiency can be misdiagnosed as POTS or "ME/CFS"!!!

He is also going to test my Ferritin again as it keeps dropping below optimal. I was told it needs to be 80+! I think he said he is doing another FBC and folate too.

How would I get my magnesium and zinc monitored anyway? Doctor's never test those!

I notice I have a bit of a boost from an epsom salt bath! Currently do not take Zinc but this herbalist wants me on it!

Ok I will google aldosterone steal thanks! My blood pressure is at the low end of normal.

I was told before by 2 different chinese doctors who did acupuncture on me in the past that I have a slow weak pulse. Is this linked to low thyroid function I wonder?!

Okay yep I have not been taking K2 at all! CRP is always normal. ESR however is high end usually but within range so classed as normal... pfft!

Ashwaganda makes me feel funny so I am cutting out nightshades for 30 days to see if I got a problem there. Herbalist said it is part of the family!

Rhodiola is in my daily herbal mix for lyme! Not sure how much is in it though.

H.Pylori test was negative!

I have wondered about SIBO - Small intestinal bacterial overgrowth., When I have more money together I am doing a stool test anyway so will see what that comes up with!

Armin labs did not show my Lyme but it showed a low CD57 count and co infections!

Chlyamdia pnuemonaie, coxsackie viruses both active, and a past mycoplasma pnueomanie infection. I could not afford all the tests. The elispot lyme test showed, 1, 1, 0 and got told neg for lyme but recently had weak positives showing on the NHS ELISA but they just say oh it is not a strong positive! BUT been told that it shows I have definitely been exposed !

Another weird thing, my Mum told me when I was just under 12 months older I had a raised gland in my left groin. They ran tests and could not find out why but it got better. So I am complex case really aren't I!!!

I wish you all the best too! I think being unwell for so many years means it will take some time to recover from all of this!

Thank you for your help.

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It is all very amazing and mind-boggling, for sure.

I should know. Because it all was something I had to finally wrap my head around after four decades of illness. I had to find a way to health, as death was knocking on my door and no doctors were listening. I had been sick with "unknown" illnesses and "unusual" health issues all my life.

None of the illnesses were unusual, really. It's just that doctors don't get out of their routines much. They are not open minded and corrupted by doing what those above them tell them to do -- no matter what. It is what keeps them from being sued -- sticking to their standard protocol and the script that goes along with it.

What is difficult to understand is that most all systemic illness is due to a body not getting adequate thyroid hormone T3 into their cells. When tests for hypothyroidism come back as being "within range," what is not being tested is how much of the thyroid hormone being shown in your blood is actually getting down to the cellular level.

Without thyroid hormone making into the cells, the body begins to deteriorate on every possible level. The level of the lack of T3 in the cells is what dictates how debilitating the symptoms (and how many different symptoms) arise.

I was diagnosed with nearly every auto-immune disease you can imagine (including Fibromyalgia, which is definitely an auto-immune disease despite conventional medicine's refusal to admit it). All the medicines they were giving to me over a thirty year period worsened my symptoms.

It was only when my own research proved that the lack of iodine, vitamin D, iron and ferritin levels, selenium, B12, etc. etc. exacerbated my symptoms (no one ever mentioned issues with nutrients even though mine were one or two points above rock bottom they were deemed "within range"). This is the problem with conventional medicine and its treatment of hypothyroidism and other thyroid issues.

It is this type of neglect that allows medicine to capitalize on one illness as it turns into a myriad of other illnesses or syndromes (as they call them and find another medicine by which to treat symptoms but never as a cure).

What cured me (hypothyroid, then Grave's Disease/hyperthyroidism then back to permanent hypothyroidism as my thyroid was removed) -- was going Gluten Free (which completely cured my Crohn's Disease and IBS that I'd had most all my life); getting all nutritional levels up to optimal as per Functional Medicine and not just "in range" as the idiotic conventional medical industry follows; switching to T3 after discovering after all corrections that I still could not convert T4 in a timely manner (which caused health issues as the subsequent high Reverse T3 blocked receptors for T3 to enter my cells]. Doctors were clueless and they all adhered to "within reference range" illogical reasoning or didn't understand anything about it.

Reverse T3 is a huge problem that most will never discover they have unless they get their own labs.

Conventional medicine along with the pharmaceutical industry makes more money on the over 300 symptoms caused by hypothyroidism. If they were to admit their testing and treatment for hypothyroidism is wholly at fault for those hundreds of other "illnesses, disorders, and syndromes," then they'd lose most of their revenue in that regard.

For example, Proton Pump Inhibitors prescribed for acid reflux are a joke that is killing people. I took PPIs for thirty years as I had horrible acid reflux. The best thing I ever did was wean myself off those poisons. I felt much better off them and then found all the problems with my throat were from a lack of stomach acid -- in fact, my stomach acid was completely undetectable. Zero. Zippity-do-dah. None. No wonder I couldn't get any nutrients to stay in my body. Had I kept listening to the death wish of my doctors, I'd be dead. Plain and simple.

We have to wise up and find a way to heal ourselves. It certainly isn't rocket science. If I can do it, anyone can.

I'm healthy for the first time in my adult life. Forty years of ill health due to listening to doctors and taking every poison pill they gave me.

The biggest problem is that Big Pharma is running the show and calling the shots. They do the testing and they convince the medical industry of protocols to follow. It is a conflict of interest that is beyond imagination. Like a Sci-Fi movie we're all starring in and had no clue. But now we do.

Knowledge is power. Hypothyroidism comes from a lack of nutritional levels that keep optimal thyroid function from occurring. The fastest way to get there is by having a Leaky Gut caused by a diet that is not good for thyroid health (gluten, manmade trans fats, bromine in breads, antibiotics in meats, GMOs, etc.). It's all around us and we have been conditioned to think anything on the grocery shelves can't be all bad. Well, it is.

Hypothyroidism, for the vast majority of us, didn't fall from the sky and just pick us out from the crowd. We began to acquire it when we first became nutrient deficient due to whatever reason. Without adequate nutrients for thyroid hormones T4 to be produced (iodine is essential) and then be converted into the active thyroid hormone T3 (selenium, etc.) which must be in most every cell of the body... then dysfunction will occur throughout the body in a plethora of ways.

The thyroid regulates the heart. With thyroid dysfunction, we can have A-Fib, palpitations, all kinds of heart issues... but none of them need anything other than adequate T3 in all the cells. That's it. Most of the time, people are at varying degrees of hypothyroidism. If caught early before the thyroid itself is damaged, hypothyroidism can be reversed by adding simple iodine to the diet. It is iodine that thyroid hormone is made from. Even Levo contains iodine (surprise, surprise!), yet the medical industry says not to take additional iodine, you don't need it. They Lie with a capital L.

Every person is different. The entire body benefits from iodine. Breast cancer can be overcome with sufficient thyroid hormone T2 available to the breasts. Read up on it. You will be amazed. But it all makes so much sense.

What other single dysfunction in the body can wreak so much havoc throughout the entire body? Why is it that people with a natural TSH of 1.0 or less are healthy and don't have any of the problems others have who have had TSH higher than 1.0 that most of their lives?

Thyroid dysfunction is misread and mistreated for one reason only: GREED. Big Pharma calls the shots and doctors are beholden to them. They do what they are told and they never question the authority of the entity that keeps them rich.

We can't keep going back to the same protocol hiding behind a different conventional doctor's name tag and face. They all follow the same nonsense. It's how they are taught.

But we can learn what to do and then go about doing it.

Healing Hugs to all!

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