Struggling with hypothyroidism and seeking advice please

Hi all,

I was diagnosed with 'subclinical hypothyroidism' 'with antibodies' in February, which is rather astounding as my antibodies were never tested at this point. My TSH was 6.1.

My results were given over the phone. When I asked if there was anything that I could do to support my health with regards to diet, I was told no 'just take the medication'.

I do not have a lot of faith in GP's. I researched day in and day out. I became gluten free the day of my diagnosis and dairy, soy, nightshade and caffeine free & very low in sugar soon after due to self - identified intolerances. More recently, I am totally grain free. I only drink and cook with fluoride free, bottled water. I store food in glass jars, drink my vitamin C water from a glass with a glass straw to prevent tooth erosion and use a fluoride free tooth powder.

I no longer wear make up or nail polish and make my own household cleaning fluids from white vinegar, water and essential oils. I use sodium laureate free shampoo and castile soap for washing due to multiple chemical sensitivities.

I supplement with vitamin B12, B complex, C, D3, E, K, omega oils, turmeric, magnesium and progesterone cream.

Upon re testing in May, my TSH was 3.6 with antibodies tested this time in the region of 20. I do not have a diagnosis of Hashimoto's or coeliac, because there was never any baseline testing conducted whilst eating gluten. I am not prepared to suffer the distress of ingesting gluten for 6 weeks to get a diagnosis, as every time I inadvertently ingest gluten, I suffer terribly with increased brain fog, swollen 'sausage fingers', swollen ankles and general disorientation and illness.

I also suffer with candida, low stomach acid and MTHFR gene mutation.

I have become progressively ill over the past 9 years with severe fatigue, sleep problems, anxiety and multiple other symptoms which currently render me housebound for 5 years. I was previously an energetic, independent, enthusiastic woman wo excelled in her career and enjoyed a vibrant social life and often travelled the world - at times alone.

I was prescribed Levothyroxine in February. As a consequence of my research and how this drug my interact negatively given my food intolerances, MTHFR status and inability to absorb nutrients I have decided to bypass this medication in favour of WP thyroid, which I have ordered and hope to take soon.

My questions are not about labs or nutrients as I feel that I have a good grip on these things after 8 months of pretty non stop research. However, If you have anything to add to my current regime that may help, I am very opening to hearing your advice. There is always something to learn on this journey.

My main concerns in the interim before I start WP Thyroid are:

On top of typical thyroid symptoms, I currently have a lot of pain and distressing symptoms - mid back pain, irritable bladder, air hunger, jolting awake from sleep in distress, suspected bone spur / protrusion on my knee for 1 year, severe fatigue, mood swings, anger. I would be so grateful on feedback as to whether these symptoms are normal, how to manage them and whether NDT will alleviate some of these issues. Some days, I feel like I am losing my mind and physically disintegrating beyond my years - I am 41.

All feedback, no matter how small is very gratefully received and appreciated.

Many thanks in advance for all responses.

Yogini x

9 Replies

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  • Also recently, shooting pains in my back passage (sorry). I also take gentle iron which I failed to mention in my original post.

  • Hi Yogini, Wow, you really have done your homework!

    However, one or two little questions arose in my nit-picking brain as I was reading. So, if you don't mind an interrogation, here we go! :)

    Did you get your vit D, vit B12, folate and ferritin tested before starting to supplement? If so, do you have the numbers? Can you post them?

    Did you introduce your supplements one at a time, or all together?

    What forms of magnesium, B12, vit K and vit D are you taking?

    How much are you taking of each?

    Have you tried taking other things such as zinc, vit E, vit A? Zinc is very good for pain. And some people find that curcuma works well for pain, too.

    Have you had your FT4 and FT3 tested, and are you converting correctly?

    Have you had your cortisol tested?

    Your new symptoms do, in the main, sound like low thyroid symptoms - although I wouldn't call them 'normal'! And, very often, when we start taking levo, symptoms we haven't had before, rise to the surface.

    A friend of mine found that glucosamine got rid of her bone spurs. Have you tried that?

    Is it just air hunger you have, or are you also breathless?

    NDT works very well for a lot of people, but not everyone. If you're a very bad converter, you may find you need T3 only, as I did.

    Those are the thoughts that I managed to capture and put down. Others may come later. Don't know if any of this is going to be helpful, but you did say all feedback welcome! :D

  • Bless your heart, chick / Goosey :)

    Thank you for taking the time to respond. I'm all good and open to interrogation!!

    I have followed your posts on here for some time. You are one sage bird! ;)

    I was supplementing D3 prior to testing for a year as I have been homebound for 5 years and have little access to natural light as such. My results prior to supplementing B12 or iron were:

    B12 350 ng/l (190 - 800)

    Serum ferritin 41ug/L (12.0 -300)

    Vitamin D 53nmol/L (24.0 - 167.0)

    I take magnesium glycinate, 2,500mg every other day, B12 as methyl cobalamin solgar sublingual 2000 daily, vitamin D3 5000iu daily, Life Extension vitamin K (with the MK2 4 and 7) 2700mcg daily. I forgot to mention, I am also taking zinc, vitamin E, selenium. I take so much I often forget! I take turmeric and or curcumin c3 complex for inflammation and pain. I do not take medical pain relief as it does not agree with me.

    I am very sensitive to medication, chemicals and supplements, so I tend to introduce supplements at monthly intervals at least so I can monitor benefits and any side effects and adjust appropriately.

    How do I tell if I am converting correctly, Goosey? Out of all of my research, this is something I am yet to get my head around.

    I haven't had my cortisol tested, though I have considered this. My regime is so expensive, I have to evaluate where I prioritise my limited funds.

    I'm guessing that my cortisol was elevated for some time (several years) due to personal and professional stress, then it bottomed out and now is pretty low?

    In what sense are my symptoms not normal? I am not questioning your evaluation at all. I very much agree with you but cannot decipher the cause. I am not taking Levo or any hormone replacement currently. Could endometriosis be an issue? I know that this correlates with hypothyroidism.

    I will look up glucosamine. Can you provide clarity on what a bone spur is please (if you are able) my GP has visited me once this year in February and makes me feel like a burden as I am homebound and cannot make it to the surgery. I have never had this checked as she never comes to visit when planned :(

    I am writing a letter to request a follow up as I feel she is negligent in her care of me.

    Sometimes, I feel breathless, very occasionally, when still, not moving. Last night, I woke with jolts on 3 separate occasions due to air hunger and severe pins and needles in my right arm. It was very scary. My partner was awake and said that I presented as someone in terror, disorientated, but not fully conscious. When I get like this, I resist going to bed as I feel scared of sleeping as tired as I am. I hope this makes sense?

    I have read about T3 and it is still very much an option.

    I really appreciate you taking the time to respond, Goosey. Your feedback is invaluable to me.

    Thank you so much for your support and advice. I wish you the very best of health.

    Yogini x

  • OK, so have you had your nutrients tested since you started supplementing? Although there’s not much point in doing a serum B12 test once you are supplementing. It would have to be an active test. But, you won’t get that on the NHS.

    That’s a lot of magnesium. Is there a specific reason why you are taking so much? The kidneys are supposed to get rid of excess, but they can only do just so much. Maybe you should do a little more research into magnesium?

    Likewise the K2. The normal recommended dose is 100 mcg.

    It’s very easy to see how you’re converting. You just need to have your FT4 and FT3 tested at the same time and compare them. If you are converting well, the FT3 will be higher than the FT4 in their respective ranges. So, for example if your FT4 is 18 (12 – 22), then your FT3 should be something like 5.9 (3.1 – 6.8). But it the FT4 is 20 (12 – 22) and the FT3 3.2 (3.1 – 6.8) then you are converting very badly.

    Yes, private testing is very expensive, but we can no-longer count on the NHS to do all the necessary tests. An NHS cortisol test is just a morning serum test. If that is very low then you know there is a problem. But, if it’s at a decent level, that doesn’t mean that it’s good for the rest of the day. Therefore a 24 hour saliva test is much better, as it gives you four samples throughout the day. But, if you can get your doctor to do the morning serum test, then that could be a good starting point. But, make sure the blood is taken around 9 o’clock. I have seen tests where the blood is taken in the afternoon and the range given is for the 9 o’clock test, which is obviously a nonsense!

    What really should be priority for you right now, should be private testing to see exactly where you are at at this moment, after all your supplementing and diet changes. The ideal would be :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    Vit D

    Folate

    Ferritin

    Or, if you wanted a cheaper one, leave out the antibodies, as you do know you have them.

    I certainly wouldn’t bother with a coeliac test, as you know gluten upsets you and you are removing it from your diet. Taking the test isn’t going to give you any further information.

    Sorry, I didn’t mean to imply that your symptoms are not normal, I meant that it’s not normal to have symptoms! But, normal isn’t a word I like, anyway. It’s vastly over-used by the medical profession to the point of making it nonsensical! Your symptoms are symptoms that a lot of people with thyroid problems suffer from – let’s put it like that.

    Is there any particular reason you aren’t taking levo right now? Has your doctor refused to prescribe? Or do you just not fancy taking it? Have you already tried it?

    I’m afraid I don’t know anything about endometriosis. I believe that being hypo/Hashi’s can facilitate the disease, but I don’t know any more than that. Do you have pelvic pain?

    As I understand it, a bone spur is when a little bit of extra bone grows where it shouldn’t be. The person I used to know that took glucosamine said that it was under her heel, and that after taking glucosamine for several months, it went away. I don’t know how that works but anything is worth a try. Normally, glucosamine is taken with chondroitin. The glucosamine is supposed to increase growth of cartilage in the joints, and the chondroitin attaches it to the bone. But, she swore it worked for her. I do know that bone spurs are typical symptoms of hypo, but this person totally rejected the idea that thyroid might be her problem, despite her multiple symptoms! lol

    But I digress… doctors are very good at making you feel like a hypochondriac and a bloody nuisance. But that says more about them than it does about you! They are paid to do a job which they just aren’t doing, so it’s understandable if we nag!

    Breathlessness can be a symptom of hypo, but it can also be a symptom of many other things. Heart problems, low iron, low B12, low other nutrients. When hypo, it’s always a good idea to get your heart checked out, just to rule things out. If your heart is fine, then you need to look at other causes of breathlessness. In a roundabout way, I’ve worked out that my breathlessness is caused by low nutrients – especially low magnesium, vit D3 and vit A. For that, I am taking magnesium orotate, which seems to work better for the breathlessness than any other form of magnesium. But, we’re all different, and we all have to find out what works for us by trial and error.

    It does, however, sound as if you have sleep apnea, which is another typical hypo symptom. I, too, have been through periods of being unwilling to go to bed, without ever having worked out why – or ever trying, actually. But, it certainly could be because of that.

    But, I really, really think that your next step should be comprehensive private tests. You would know what you’re up against, then. There are details of private tests and costs on TUK’s main page. There are finger-prick tests – which are a god-send for those of us who are house-bound – you just need someone to take it to the post for you. And, it would certainly be better than floundering around in the dark, trying to guess what’s wrong, wouldn’t it. :)

  • Hi Goose,

    Yes my levels have increased in iron, Vitamin D and B12 3 months on from supplementing. I'm not sure how reliable these tests are though as supplementing can skew tests. My folate is now above range by 5 points as far as I recall which I have read can suggest pooling / pernicious anaemia? I'm not sure how to interpret this as yet? I eat lots of greens so this may also be a factor? Is high folate ok or can it be detrimental to health?

    My GP prescribed me Levothyroxine, but I am reluctant to take any prescribed medication without research after being overprescribed SSRI's for 17 years for what I now know to be hypothyroid symptoms. I have suffered several adverse and distressing reactions to SSRI's and have been tapering my current dose for the past 2 years - I am now down to 2.5mg from 10 (when my GP advised me to take 20mg but I never did!!!)

    The Levothyroxine that I was prescribed contained gluten and lactose. I really didn't see the point of being so stringent with my diet whilst ingesting gluten and lactose daily in a medication that was supposed to help me. I asked for a free from medication to no avail and worked on my diet, lifestyle and supplementation in the interim.

    I take the recommended dose of vitamin K as encapsulated and half of the recommended dose for magnesium (powder formulation). I think that magnesium helps to relax me and I know that most people are deficient in this mineral, but will take stock and review my levels. Thank you for alerting me to this.

    My last T3 / T4 levels (May 2016) were:

    Free T3 4.9pmol/L (3.5 - 6.7)

    Free T4 14.4pmol/L (10 - 19.8)

    I have been having heavier periods and a shorter cycle (25 days or less), sometimes 2 periods a month and horrendous PMS 10 days leading up to my period. This is what makes me suspect gynae problems, but I know equally it can all be down to hormonal imbalances (which I requested testing for quite assertively to have my suspicions confirmed).

    I believe that my breathlessness is also due to a lack of iron and B12 that causes decreased oxygenation especially when stressed or run down. However, this does need checking, for my own peace of mind. SSRI use is also associated with heart problems and they parked me on them for 17 years for no good reason! My friend, previously fit as a fiddle is now suffering debilitating heart problems at the age of 50 following SSRI use. The same pharmaceutical company who profited from her SSRI use continues to profit from her poor heart health. It really is despicable. Hence my lack of trust in GP's. I view them as legitimised drug pushers. That is a whole other conversation!

    Funny you mention sleep apnea as this has been something at the back of my consciousness for some time. Again, thank you for raising this and affirming some of my thoughts which I need to have investigated by my GP.

    I plan to get tested via my GP or privately, but see no point in doing so until I trial NDT to see how it benefits me or otherwise as in the interim, my TSH could be on a rollercoaster of ups and downs that would not be of any benefit for me to assess.

    In the 8 months since my diagnosis, my diet, which was always pretty good is now dense in nutrition and will not only support my thyroid health, but also my heart health and is anti cancer / inflammation. I have lost 2 dress sizes and continue to lose the weight that hypothyroidism caused me to gain without medication. In doing so, I kind of shot myself in the foot in terms of accessing NHS healthcare as I am now 'within range' for thyroid even though still very ill. That said, I'm delighted with the progress that I have made thus far as a result of determination and hard work and will continue on this path.

    Thank you so much for your advice & support, Goose. You are a shining star in this community.

    I wish you the very best of health with huge dollops of happiness ;) x

  • You have all of my symptoms, I've had them since I was 42, am 55 now. I've put it down to menopause, volatile blood sugar due to diabetes and probably thyroid as well. And I also have endometriosis. I do find that my air hunger/SOB is better since getting back on levothyroxine, though.

    You are taking WAY too much magnesium. The recommended daily intake/requirement is 320 mg per day for women. And the maximum amount of magnesium from supplements should not exceed 350 mg per day. You are taking 3.5 times that amount at 2500mg every other day. Magnesium is an electrolyte, your body will only store so much and then get rid of the rest of it via your kidneys. You are overwhelming your kidneys with that excessive and unnecessary amount of magnesium which could eventually cause kidney damage.

    I find health food store supplements will list a recommended intake, but alot of the time they are WAY out to lunch and can cause us ill health. For example, my multivitamin contained too much zinc when I took the recommended number of capsules per day. The zinc added up to 30mg per day, and it gave me sideroblastic anemia because it interfered with copper absorption and caused me to become deficient in copper. This type of anemia will cause low WBC (neutropenia), hemoglobin and hematocrit.

    Unregulated health food store supplements can be dangerous, I found out the hard way.

  • Hi Kalicocat :)

    Thank you for taking the time to reply. I appreciate it.

    I've checked my magnesium intake and half of a 5g scoop equates to 200mg every other day - not 2500mg as I initially stated. My bad! I was reading the volume as the same as the dose which was wrong. My vitamin K supplement still seems to be on the high side, so I need to look for a new one with a lower dose. I understand what you are saying about supplements and would prefer not to take so many long term. My iron, B12 and vitamin D3 all require optimising to facilitate my thyroid function, which is hard to do through diet as I suffer from low stomach acid and poor absorption. Eating & digesting red meat is very difficult even when I take apple cider vinegar before meals to increase stomach acid to aid digestion.

    I don't have diabetes or any sugar spikes since becoming gluten and sugar free in particular. What is SOB?

    I really feel for you suffering these symptoms for so many years. You say you recently noticed improvements on levothyroxine. Did you switch from NDT or where you not medicated during this period? Also, what symptoms did you have and how did you discover that you have endometriosis (I hope that you don't mind me asking?) My Mum had fibroids in her 40's but no diagnosis of endometriosis. Are fibroids connected to endometriosis or a completely separate issue? My testosterone is on the high side, though within range - not sure if this would have an impact on my periods in any significant way?

    Thank you again for your feedback x

  • Sorry for not responding sooner, I didn't get notified that you had replied to my post. That's good news about your magnesium supplements, what you're taking is fine!

    SOB stands for Short of Breath.

    I had stopped taking levothyroxine for a few years as I was losing so much weight from diabetes and wanted to see if stopping my thyroid medication would help stop the weight loss. My TSH went up to mid 2 to 3 and stabilised, didn't feel too bad and antibodies were gone. They went up again a year and 1/2 ago and TSH started fluctuating earlier this year. So I've just restarted levo due to a jump in TSH.

    I knew to check for thyroid antibodies as I was getting near menopause, so when they started up again, we started checking bloods every 3 months and sure enough my thyroid started to fail. My symptoms are flu like, weakness and shakiness, shortness of breath, brain fog, wide spread pain (joints, neck, back and muscles), muscle cramps, irritable bladder (I think from menopause), dry EVERYTHING, panic attacks, burning feet, hands and arms (neuropathy), insomnia, I could go on and on. The weirdest symptom yet is brain tingling/buzzing - frigging hate this one because I can't think straight when it's happening, very very brain tired....

    With respect to endometriosis, I used to get WICKED cramps, excruciating sharp pain, finally had a laparoscopy that showed endo. Had 3 surgeries altogether. I feel that it's come back now, but not as intense so I'll leave it alone and it should die down after I'm through menopause. I think fibroids are a totally separate issue.

    Have they tested your insulin levels? High insulin can cause high testosterone in women. Google Polycystic Ovarian Syndrome (PCOS). I know you said your testosterone is within range, but you may want to test insulin and get an ultrasound done to see if you have cysts on your ovaries, that would affect your periods. You could also be starting perimenopause, I think I started at 42, because I noticed my periods were heavier/lighter and shorter/longer in addition to a totally different schedule than what I used to have. Perimenopause has sure been hell for me, I'm hoping that I'll feel normal one day once the hormones stop bouncing around. Fingers crossed.

    People with diabetes have a much harder time with perimenopause as the fluctuating estrogen causes large swings in blood glucose, at least that's been my experience. How are your glucose levels, have they done an HBA1C test?

  • Oh, I forgot to tell you, that I also wake up from a DEEP sleep trying to breathe, so I think I stop breathing in my sleep. It seems to happen in clusters, 2 or 3 times within a week to 2 week time period and then I go months and months before it happens again. Scares the CRAP out of me. In fact, it just happened the other night, but i think this time it was more due to reflux and I think I breathed some up.

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