I’m hoping someone might be able to shine a light on my health situation. I am a 74 yr old female and have been ill for years. I have been following posts on this site with great interest and amazement at the knowledge shown here and the suggested guidance offered. I’m not even sure whether mine is a thyroid matter and apologise if I’m taking up time unnecessarily.
I was diagnosed with breast cancer last summer and as I hadn’t felt well for years I could see no point in having any conventional treatment. I suffer from breathlessness all the time which varies in intensity and was diagnosed with adult onset asthma & chronic hyperventilation in 2016. I have never had an asthma attack and I know I breathe correctly as have been doing Buteyko breathing & training for the last 5 years.
In hoping to make myself as healthy as possible I had a thermogram which, apart from the tumour, showed a very hot patch across my lungs but my hands, feet & nose were too cold to register. I had recently had chest, CAT & bone scans after diagnosis but nothing untoward showed up. The therapist suggested I took iodine along with various other supplements etc.
I was amazed at the energy I suddenly had after about a month of taking Lugols and I started to sweat in the sauna which I had never done in my daily sessions since buying the sauna for health reasons 2 years before. I needed more help so I joined a Facebook group who mainly followed Dr Brownstein’s Iodine protocol.
Here I was introduced to everything thyroid. It was a totally new language to me but a lot of symptoms were those that I had struggled with for years:- fatigue, cold hands & feet, low basal body temperature 36° that didn’t change much during the day, hair loss, aching muscles etc etc. I also discovered a link with ME/CFS which I had been diagnosed with 35 years ago and was told I’d probably had for at least 10 years previous to this. I had to retire from teaching on ill health grounds.
I decided to talk to the GP & ask for tests. I was told that the last tests I’d had, 2 years before, showed nothing abnormal on TSH & T4 and that I was perfectly healthy. That was it. I showed the results to the group and I was advised to have private tests done including antibodies,T3, reverse T3 etc. All ‘normal’.
This week on this site there was a post from someone who had been given a diagnosis of non anaemic macrocytosis. This raised my interest as I recently had a private full blood test because I had been feeling very giddy. I discussed the results with the doctor because the MCV & MCH are very high and the short explanation that came with the Medichecks test said this could show hypothyroidism or macrolytic anemia. I googled this and said could cause breathlessness. The doctor dismissed it as he said my last blood test a year or 2 before was also high so it was ‘normal’ for me. Stupidly I didn’t think to remind him that I had been ill for 40 years & perhaps this was a reason why.
I will post my results below. I would be very grateful if someone could say whether it is possible I have a thyroid problem which may be causing the breathlessness and if so do they have any suggestions as to how I could improve at least this aspect of my health to make my life more comfortable. I doubt whether I will get any help from my GP . I really don’t understand any of this. BTW I don’t drink.
Well woman advanced blood test June 2023:-
Red cell count 3.78. (3.8- 5.8)
MCV 99.7. (80-100)
MCH. 32.9. (27- 32)
White blood cells
Lymphocytes. 1.4. (1.5-4.5)
Iron. 23.9. (10-30)
Ferritin. 121. (30-650)
Folate45.4. (8.83-60.8)
Vit B12. 60.3. (37.5-188)
TSH. 3.29. (0.27-4.2)
Free T3. 4.01. (3.1-6.8)
Free thyroxine. 13.8. (12-22)
Earlier (March) thyroid test showed:-
Thyroglobulin antibodies. 11 <115
Thyroid peroxidase antibodies. 13 < 34
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Jax49
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Welcome to the forum Jax49 I'm sorry I can't help you out with interpreting any of your results, my knowledge is still quite limited but, you've certainly come to the right place to start getting at least some of the answers you need *and deserve* in order to try improve your QoL. As you've observed, this forum is amazing and very supportive with members and please don't think of it as "taking up time unnecessarily" as, if any of your queries can't be answered, there's usually someone who can offer that guidance and direction. 🙂
I was so touched by your post, which in many ways mirrors my own and so many others (all) on this forum: dismissed; met with the ignorance of medics who would seem to be well-versed in something akin to numerology and giving out stat responses and phrases [like] "normal", "you're healthy" or insinuating it's "all in your mind"; and consequently suffer for years and get lost in the system. It truly saddens and angers me in equal measure. In fact maybe the NHS should be renamed the NDS (National Dismissive Service)?!
Sending you a warm, welcoming ((hug)) before I take my weary old bones off to bed - Goodnight and I do hope you are able to have a good night's rest 🙂❤️
ETA: I'm so sorry about the rather weird way I signed off - strange and long day yesterday, with on-going, ever-worsening home IT/landline/lifeline problems and I was very, very tired. 😶😴
Thank you PRJ for your very warm, reassuring message. It is greatly appreciated. I do hope you had some refreshing sleep.
I will quickly add here that since last summer I have joined quite a few online support groups and I find it so very sad and immensely worrying that so many people are not getting the help they need to enjoy a healthy and happy life. Many of them are young too.
Unfortunately, I too am not in the most knowledgeable camp (though I ought to be, I'm lazy) but hopefully they'll be along soon to help you.
But from a glance your so-called 'nothing abnormal'' thyroid levels aren't great.
Your TSH is too far above the range, your FT3 levels are low within the range and your FT4 levels are also low in the range. Your antibodies are within range, but although something like over 80% of people have autoimmune mediated hypothyroidism, not everyone with hypothyroidism does. Plus, the antibodies can fluctuate and appear to be within range. Some people can even achieve a negative antibody result purposely through diet & supplements etc.
Ultimately the end result is the same. You feel rubbish and your metabolism starts to slow down.
I am a bit concerned about the iodine. There's debate about whether taking iodine makes you more hypothyroid. I think the online pro-iodine groups you're talking about tend to advocate for taking quite high doses. I am for taking iodine and think lugols is great (and preferable to sea kelp) but not at the high doses advocated by some. I don't know how much you're taking but it could potentially make you worse. It also needs to be balanced out with selenium.
In short. Yes you do have issues with your thyroid. But why, isn't completely clear.
You are unlikely though to be offered levothyroxine by G.P. at least I don't think so, wiser heads might know more.
Your B12 levels need improving as does ferritin. I urge you to get vitamin D levels tested as Vitamin D has a role in our immune system, conversion of thyroid hormone and iron levels (according to a naturopath I spoke to recently it's a cofactor)
You may find supplementing selenium 200mcg daily gives your thyroid levels a slight boost especially if you're supplementing iodine. Very important to take if doibg this.
Thank you for taking time to reply and your comments.
Yes, I am taking high dose Iodine (100-200 mcg)as it is recommended for breast cancer. I will add here that the consultant wouldn’t do the expected ultrasound when I saw him in March as he felt as there was no change it wasn’t worth it! So It seems that the iodine was keeping the tumour in check after 9 months. I was due to see him next week but it has been put back til August.
None of my health problems have started or worsened since I’ve been taking the iodine and I have also been supplementing with selenium - which I have temporarily stopped as the test showed I was very high, magnesium & vitamin C. I was also supplementing with ATP co factors B2 & B3 but since the beginning of June I have been taking a multi B vitamin along with a host of other anti cancer supplements. My vitamin D level has been good for a while. Currently:-
Vitamin D 142 nmol/L50 - 250 but down from March test of 182 nmol/L 50 - 200 as I cut back on supplementation .
Selenium 2.29 umol/l. 0.66-1.57
My Ferritin level has dropped a little since I was advised to cut down on red meat but I do eat masses of beans, lentils & green vegetables.
Of course, I'm so sorry I didn't factor in the positive effect of the iodine for the cancer. Forgive me. This may well be a case of choosing the lesser of two evils.
I have read (but I stress this is from random reading at a time when I was thinking of taking a high dose iodine protocol myself and the science is likely spurious, and not advocated by this group) that applying the lugols to the breast directly can help. It's referred to as 'painting the breast' you probably already know this from your iodine group but can look it up online. The suggested amount is at least 6.5% lugols solution if I recall correctly.
Welcome to our forum and sorry to hear you’ve been ill for so long.
You need adequate and usable Vit B12, folate, iron and thyroid hormones to achieve good erythropoiesis. Your Vit B12 has room for improvements, serum iron looks fine but ferritin is low. You would need an iron panel to see how iron is being utilised by the body. Thyroid hormones are low in range and many need slightly higher to maintain wellbeing. TSH at the higher end of range indicates it trying to induce higher thyroid hormones levels, but your use of iodine could have skewed results. Are you still taking it?
Pernicious anaemia is common on this forum as autoimmune conditions often go together but you are negative for thyroid antibodies. However, your lymphocytes (WBC’s) are below range. These are the WBC’s that drive thyroid gland autoimmune attacks and literally wear out after years of over stimulation, so autoimmunity can not be wholly ruled out.
Another cause of anaemia can be low body temps that hypothyroidism induces. For bone marrow to manufacture new blood cells that work in a healthy fashion, its need to be at the correct temperature.
Management of macrocytosis anaemia consists of finding and treating the underlying cause. Your GP may be beholden to the TSH which isn’t over range, but he is also missing/ignoring a lot of signs that could be investigated. Lots of hormones naturally decline as we age and the old method of dosing thyroid hormone replacement used to be to reduce Levo in elderly people, which was awful because their need for ‘normal’ levels didn’t diminish. I’m not sure of todays protocols but would assume your GP would be concerned about introducing Levo and the risk of it increasing your heart rate too much.
Use of some medications can also indirectly affect red blood cell production, leading to anaemia. Are you using a PPI such as Lansoprazole or Omeprazole?
As Radd and Alanna have said, your B12 levels are a bit low and could do with improvement. You’ll get links from other members of websites to check this out, but it seems like active B12, which you’ve tested, should be above 100; total B12 should be above about 550.
From my understanding, you need B12 to make red blood cells. You need iron to make haemoglobin to fill the red cells. If you have good iron levels, as you do, you’ll be making the Hb but not having sufficient B12 to make sufficient cells the ones you do have become ‘overstuffed’ with Hb and end up on the large (macro) side. Your red cells are large in range, but the actual number of them is just under the bottom of the range.
The ‘cure’ for this would be to raise your B12 levels, so you have sufficient building blocks to make the cells. As to why your B12 levels are low, could be diet, could be non-absorption of B12, could be ????? Your doc should be able to run some more tests.
As I said, you’ll get links, Slowdragon is very good at giving out all the information you need, arm yourself with the relevant info and tackle your doc.
Thank you for the helpful information Beads. I’m beginning to understand a little more on how this all works. I’ll drop the multivitamin B and take the Bs separately. It’ll mean I can monitor them individually.
I can’t believe how early you all get going. I feel I’m sleep writing but I’ve never been an early riser. Thanks everybody for your invaluable support.
Thank you Radd for replying so quickly with some useful information. I was not on any prescribed medication at the time of the test, in fact I’ve had none for years except for an asthma inhaler which I rarely use as it doesn't seem to help . When I try to discuss a possible thyroid problem with the GP the conversation just ends with the fact that tests results are ok.
I think I’ve read that this site has a list of doctors who are perhaps more sympathetic to one’s symptoms rather than just test results. I will see if there’s one in East Anglia with whom I could discuss the points you have raised. I haven’t done this before as I wasn’t sure that I might have an issue with the thyroid. Thank you again for your help.
Just because it's not listed on the NHS website, it doesn’t mean it is not a symptom. We need thyroid hormone to drive the breathing mechanisms just the same as all other bodily systems.
In his book The Metabolic Treatment of Fibromyalgia, Dr Lowe claims breathlessness from inadequate thyroid hormone levels are caused by:
1. Weakness of their respiratory muscles, including the diaphragm. Researchers call this weakness of respiratory muscles "hypothyroid myopathy."
2. Impairment of the phrenic nerves that regulate contractions of the diaphragm. When impaired, these nerves send too few signals to the diaphragm for it to contract normally.
3. A decreased "central drive of respiration.”. This means that the brain centers that regulate breathing are impaired by too little thyroid hormone regulation.
4. An abnormal heart and lung function. Some patients suffer from air hunger when they exert themselves; others do so even at rest.
I was breathless too before being optimally treated with thyroid hormone replacement meds. Your breathlessness would also likely be tied up with dysfunctioning RBC's.
With my thyroid hormone dose lowered one of the issues I had was definitely breathlessness. I once had to "rescue" my cat by climbing over a fence and found myself laying on the kitchen floor gasping for air. I also was fairly out of shape because I had no energy. So that might have contributed.
Just to add my bit. Apart from being wonderful whilst facing your issues and dealing with them, I have to say I am so impressed. My experience with breathlessness and hypothyroidism is …… when asked if I had difficulty breathing I tried to honestly answer “NO” but that has never been the whole answer. Some wise person in this forum described the situation to someone else but I picked up on it. It was described more as ‘air hunger’. This I do suffer from, from time to time. My lungs are being adequately filled with air but just something a bit off with the mechanism, a sort of ‘stiffness’ in the lungs, kind of reluctance for lungs to let go of the air. Not painful just difficult. For me it’s definitely thyroid related.
The choking : That for me & one of my relatives was due to B12 deficiency. It was one of my earliest signs, even before the bugs crawling and tingling started. Completely gone with injections. Probably has something to do with the nerves in the throat. I even got aspiration pneumomia from it !
I get that too. However since starting with a sleep apnea machine this is much improved. In fact this has a close relationship to my lack of T3. BUT I had a bad episode recently when I mistook (on reflection) the choking for a panic attack. PS thank you for the help everyone on the forum gave at that time! Speaking to my sleep apnea people assured me that this still can happen on the machine but should be much less often - which it is. I am thinking that before, including very heavy duty palpitations were probably not due to my attempted intake of T3 after all - at least not in a negative way. It maybe I am being too optimistic saying this but I think it’s good quality observation (in my case). Soon I must return to T3 for many reasons. “Laxity” blooming everywhere. Classic symptom for many suffering hypothyroidism and presenting in all sorts of ways no doctor could imagine.
Like you I can suffer from breathlessness but only when my free T3 drops below half way in range. It doesn't feel the same as the " restricted airways " I had in the past with allergic asthma in summer which was helped by using an inhaler. This felt more a " mechanical problem " The muscles involved in breathing - the diaphragm and intercostal muscles are made of skeletal muscle whose activity is compromised by low T3. I hope someone on the forum can explain this to give you evidence and ammunition to discuss with your doctor to have a trial of some levothyroxine to see if things improve.
I get breathlessness with my hypothyroidism and hashimotos, when my meds are not quite right. I am a gym goer (when well) and aged 40, so very far from unfit, yet when things are not optimally balanced I get out of breath walking up the stairs and have an almost tightness to my chest - like there's a belt around it. That in turn causes fatigue amongst other things, and an inability to do more than just the basic stuff. It's not a difficulty breathing, it's that it's.....laboured and hard work. Best way I can describe it.
Dont let a doctor fob you off.....we've all been victims of that. If how you feel is not "normal" for you, despite everything you have gone through, then trust that feeling.....you will almost always be right.
I have something similar. I used to be a marathon runner but now struggle to run more than a couple of hundred metres at a time, feeling I can't get the air into my lungs quick enough. I am on 75mcg of levothyroxine and feel well otherwise at the moment, but have been very ill over the years with hashi flare ups. I didn't realise what they were at the time because it was before I discovered this forum. I was given antidepressants which had no effect. My TSH and T4 have varied quite widely over the years. T3 was not usually measured but since going to a nutritionist for weight loss, she advised me to ask for this to be tested and my GP now does it. I suspect a raise in my levo would help things but this falls on deaf ears with my GP as it is in the 'normal range'.
I'm having the same issue at the moment so am seeing a different GP next week. There are lots of resources on here people have posted, to help your discussions with the GP. Vitamins etc are key, I've learned that fast, so read back on some other posts about optimal vitamin levels too. I have a rough time with B12 absorption but GP thinks it's all fine- similar symptoms from that and it doesn't help the hashi stuff either. Good luck mate
I too had a question about being diagnosed with late onset asthma which has now gotten worse. The salbutamol inhalers which worked at first stopped working years ago and the Fostair inhaler I am taking to "control" it doesn't anymore either.
So I went digging around and found these articles which might be useful for you. I certainly intend to show them to my asthma clinic at my next appointment.
Welcome Jax49. I'm sure that one of the administrators will have superb advice for you. Looking at your values I see several issues . TSH is too high and FT4/T3 too low for my liking. Some of the other values are not ideal either.
Sorry you have been suffering for so long. For me breathlessness was one of the first symptoms I got when my levels were ‘subclinical’ 2 years ago. My thyroid panel around that time was very similar to yours. As I have been medicated it has subsided.
I have been overwhelmed, both literally and metaphorically speaking, by the response I have had from you all today and your generosity in sharing your own experiences with me.
Its an August weekend and you all have so much to do yet you have made time to give me more information, advice & help than I ever could have imagined. Thank you all so very much.
I will be considering everything you have offered and hope to find a way forward though I can see this isn’t going to be an easy ride.
A final thought, if I had to go private to discuss this is there a list of sympathetic doctors on this site?
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