1 Big Fat Circle around the NHS - advice please on my new non-NHS plan and blood results :)

This is my first (sorry rather long!) post. I was first diagnosed hypothyroidism 9 years ago (2008), after the birth of my first child. (No ranges given but TSH was 76, FT4 = 3.4, Anti TPO IgG Anti body = positive = 822iu/ml (normal = 1-50 iu/ml))

150mcg Levothyroxine commenced. 5 months later levels were TSH = 0.3 and FT4 17.1. TBH I just took the medication and that was it. I never saw an endocrinologist. I didn’t know about Hashimoto’s etc.

To cut a long story shorter than it is, I’ve been feeling rubbish for 5 years now.

Symptoms over last 5 years (not all at once and not all the time) are:

Tiredness/exhaustion, Brain Fog, Carpal Tunnel, Swollen painful (but not red or hot) ankles, hands and toe joints, General aches and pains, Sleepiness (I used to run bed and breakfast and sometimes would lie down on the beds I had to change and then wake up hours later!!), Feeling Cold, Weight Gain, Dizziness, Breathlessness, Recurrent Sore Throats, Muscle Spasms, Pins & Needles, Skin lesions, Dry skin/hair, Hypoglycemia, Rosacea type rash on my face.

I’ve been back forth to the GP (5 of them actually – just because it’s a big practice and you rarely see the same one) so many times and told them 5 years ago I thought it was all thyroid related. The last two years the symptoms started to get unbearable so that at times, I couldn’t run my own business and had to pay someone to do it. I struggled to walk short distances and was so tired and foggy. (There was lots of stress in personal life at this time as house flooded and we had to move out for 8 months while we re-built our home). I have coeliac disease which I am strictly gluten free for. Over the last 2 years I have seen 3 different Gastroenterologists (again just because they kept changing) and 2 dieticians, all who have been either disinterested or unable to help, had a hospital admission due to the joint swelling and was treated with IV antibiotics and then treated by another consultant for 3 months high dose oral antibiotics as they thought it may be a random mycobacterium infection, seen three rheumatologists (in an attempt to find the cause of my problems), been given steroid injections to no effect, had x-rays, CT scans, cameras. It’s been suggested I have depression or Fibromyalgia, or my symptoms were just post-viral, which I don’t agree with and I have dismissed as possibilities. I’ve been told by 3 doctors/consultants that I probably just need to accept that this is how I’m going to feel from now on.

I’ve had my TSH and FT4 tested 8 times on the NHS in the last 2 years, convinced it was thyroid related and after to managing to persuade various people to test it. It always came back ‘normal’. Before now, when everything came back in range, I believed it was Ok. Also before finding this site and reading the advice here I always took my thyroxine medication before my blood test and therefore now question the reliability of any of my previous TFT results. Back in December 2015 my results came back as TSH = 6.21 (0.3 – 5), FT4 = 13.8 (10 – 18.7). Wahoo a non ‘normal’ result so I rush down to be GP to be actually heard, and we retest and it’s all in range again! (The morning of this test I had vomited after all the antibiotics I have being taking so perhaps why it showed higher than usual as I hadn’t absorbed my thyroxine meds).

Then I found this website. And I feel a little hopeful again. I’ve read about needing to be at a certain place within the ‘normal’ range to feel human and also the role of vitamins and minerals. Back in March 2015 Ferritin came back 5ug/l (range 11-200), Vit V 25-OH 28.3 nmol/l (normal >50 nmol/l). Prescribed Ferrous Fumerate 210mg x3 and Vit D supplements (D3 20,000 unit capsules) for 3 months. Retested for ferritin 6 months later = 22 ug/l (11-200) and Vit D 9 months later 45.3 (>50). GP said all ‘normal’ so off you pop, I’ve done my bit, its winter so your Vit D will be low, it takes a long time to feel better after going gluten free, oh and come back if you want those antidepressants. I didn’t realise that to feel better I had to be higher up in the range.

So now my plan:

I take 150mcg levothyroxine first thing in the morning.

Then I take my antibiotics for rosacea like face rash at about 11am

Have just started 200mcg Selenium (l-selenomethionine) 2 weeks ago (based on advice found here).

I started ferrous fumerate 210mg x3 a day this week (I can’t face liver I’m sorry) and take them well away from my thyroxine but take 1000mg Vitamin C throughout the day with this.

I plan to start a magnesium bisglycinate 1000mg next week and a Chelated Zinc 15mg supplement the following week.

Given that 3/5 rheumatologists said Vit D supplements are toxic to me I’m going to have to leave that one for now (as they say I may have sarcoidosis due to elevated ACE but no other manifestation apparent).

I’m already gluten free.

I reduce my lactose intake by using lactofree products. I’ve considered going dairy free but not only do I love eggs and cheese, I’m concerned about the restriction of more nutrients such as calcium etc, especially with the coeliac disease. I’ve considered eliminating soy, nightshades, sugar. I’ve researched the Autoimmune diet. I only want to eliminate the necessaries – so what would be the absolute, proven musts to eliminate? Are there any other things I should try?

What are your thoughts on my bloods? Obviously I’ve read about NDT and T3 on this site – any thoughts on these for me? Do you think I could have a conversion problem or is it an absorption problem?

I want to go it alone now. I’m exhausted from the NHS and I’m fairly sure the NHS is exhausted with me. I can’t cope with the emotional rollercoaster anymore. I’m OK to buy my own medications and supplements and blood tests as necessary.

I’m amazed by the generosity of time that so many of you give on this site giving advice, opinions and suggestions and would love so much to find my own path to wellness again. Thanks so much for reading! And thank you so much in advance for any thoughts, you lovely, generous people.

I have results for Vit D, B12, Ferritin due on Friday but from previous recent results I suspect D and ferritin to be low but B12 to be OKish at about 400.

TSH – 1.74 (0.27 – 4.20)

, FT4 – 19.89 (12-22)

, FT3 – 3.73 (3.1-6.8)

😊

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7 Replies

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  • You do have a conversion problem, that's for sure. And your TSH is too high for someone on thyroid hormone replacement - you'd probably feel better if it were one or lower - not that TSH makes you feel anything, but a higher FT3 will mean a lower TSH. It's low T3 that causes symptoms.

    You do not have to give up eggs if you give up dairy. Eggs aren't dairy. Dairy is anything made from milk - as in a dairy, where the cows are milked. Eggs are laid in the hen house. :) And don't worry about lack of calcium if you give up dairy. Lots of veggies have calcium, too. But, if you start taking vit D3, don't forget to take some vit K2 - MK7 with it, because that will direct the extra calcium into the bones and teeth, rather than the soft tissues.

    Your B12 could be higher - at least 500. Under 500 puts you at risk for neurological problems. But, if you take methylcobalamin (B12) you also need to take a B complex to keep the Bs balanced.

    The most important thing to eliminate, is unfermented soy, because that will affect your thyroid hormone replacement, preventing it from getting into the cells. For the rest, it's down to individual needs. Not everybody gets any benefit from gluten-free or dairy-free or whatever. You have to try things and see what works for you. :)

  • Gosh thank you greygoose, so much. I already feel a relief from relieving your reply! So much in your message that helps.

    Can I ask- So in your opinion would it Make sense for me to consider T3 In addition to all the vitamins And minerals work I have to do? Thank you thank you!

  • Yes, indeed, if you can get hold of some, a little T3 would be a very good idea. :)

  • B12 needs to be at least 500 to avoid permanent neurological damage - aim for 1000. D3 at least high 90s, folate half way up range and ferritin at least 70. You look as though you are not converting T4 to T3 at all well. This could be because of low B12 etc, or it could be genetic. I'd consider adding T3.

  • Thank you so much Angel_of_the_North. I am very grateful for your thoughts.

  • Depending on how long you were Coeliac prior to diagnosis and diet change, there may be significant residual damage to the villi in your intestine and duodenum. Your ability to absorb iron, B12, break down protein to amino acids, etc. is compromised. The iron pills are probably mostly floating on by. Meantime all that iron stays in your bowels and feeds pathogenic bacteria which require iron to live.

    Rosacea has to do with gut health and gut microbiome. When the gut is healthy, rosacea clears up. (I had it for years and it's been gone now for a long time. I was using a cream containing Metronidazole and not taking oral antibiotics to control it.)

    If you eat a serving of pulses every day, that will boost the bifidobacteria count in your intestines and help to outcompete bacteria that are not conducive to good health. Bad bacteria in the guts (the ones without cell walls and their breakdown products) get into the circulation. A high fibre diet will encourage higher populations of 'good bacteria'. (not cellulose which even our gut bacteria can't break down.) Soluble fibres like what's in oats, beans, mushrooms, etc. Just look it up with google and take your picks. Probiotic yoghurts are not effective in encouraging longterm increases in beneficial bacterial counts. Most of the bacteria in these products are not native to the human gut. A person needs to cultivate their own gut microbiome.

    Eggs contain the most efficiently absorbed protein. People who have damage from coeliac disease need to consume proteins that they can readily absorb.

  • Gosh thank you gabkad- and I m very reassured by your success with your rosacea- I had wondered if it was digestive related but the GP said no of course! I tried the cream but did seem to make it redder and angrier but I'm reassured that through better gut health, it should go. Thanks for your time and advice.

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