First Time Writing.. My Story

Well wasn’t it just grand to be diagnosed with borderline hypothyroidism just as I became 65 in May last year… hence my username! I could not believe it, I had no outward symptoms. I had only gone to the Doctor because I’d had a course of antibiotics for a cat bite and ended up with a furry tongue that refused to clear up so I was sent for a blood test. I had been packing for weeks full of energy and with military precision to move house at the end of May. I was prescribed 50mcg Levothyroxine and told to see my new GP in three months. By July my head was getting foggy, my legs would buckle with weakness as I got out of a car. My hip became so painful I limped. I ached all over as if I were 105 years old. End of July into August I would sit like a zombie unable to focus on things to do. Sometimes I would be naughty and not take a tablet. On those days I could focus and function and I realised it was the tablets that made me feel so weird in the head. I began to feel suicidal, crying a lot, crying even as I woke up in the mornings. It did not matter to me that I had three wonderful daughters and three grandchildren. I wanted to die. At the end of August my husband rang Shropdoc. I was on the brink. I was offered Prozac but I refused. It was now the end of the three months and I went to see my new GP. I begged that I could stop taking the Levo. The doctor said he couldn’t understand why my previous Doctor had started me off at 50mcg. I fought my corner. I had no symptoms of hypothyroidism so he agreed to let me stop the Levo. Within a week or two I was bouncing around like a spring lamb and functioning as my normal happy, positive self. By December symptoms were actually beginning to kick in, tiredness, fatigue, thumping heartbeat, breathless. You can imagine my reluctance to go back on Levo but I did at 25mcg. It just wasn’t enough to be told my TSH was okay or normal, keep taking the tablets. I wanted to know what was going on in my body, I never wanted to feel suicidal on Levo again so I saw a private Doctor in London at the end of January this year. The main things that stood out in the blood results were:

ESR 24 (mm/hr 1 – 20)

Active B12 254 ( pmol/L 25.1 – 165.0)

Immunology

Intrinsic Factor antibodies 8.1 ( U/ml Normal: <6 U/ml)

Thyroid Antibodies

Thyroglobulin Antibody 138.4 ( IU/ml 0 – 115 )

Cortisol

Sample 1. Post Awakening 35.60 (7.45 – 32.56)

Sample 2. +4-5hours. 11.96 (2.76 – 11.31)

Sample3. .. 18.37 (1.38 – 7.45)

Sample4. Prior to sleep 2.99 (0.83 – 3.86)

T3: T4 Ratio 0.29 (0.50 – 2.00)

Iodine (Urine) 243 (100 – 199)

The private doctor gave me Adrenal Support. Natural Glandular 100mg. Three capsules daily. DHEA 25mg, one capsule daily and Serotone 5HTP 100mg, two capsules at night. I stopped the DHEA after a few weeks as I broke out in spots on my face and head. I have felt happy, energetic and focused. I did not realise how ‘wired’ I was until the Natural Glandular kicked in. Now I’m chilled! I have gone at my own pace increasing the dosage of Levo. I’m now on 75mcg. My GP took a copy of my blood results. She was very interested. She can’t do much for me but at least she listens and is sympathetic.

I’m due another telephone consultation at the end of June with the Private Doctor. I know he will want me to have another blood test but I shall turn to Blue Horizon for that.

I worry what hypothyroidism has in store for me in the future. How much Levo is enough? Will I get more symptoms as time goes on that Levo can’t fix? I read daily on your forum, I think I’d be a basket case if I hadn’t found you so from the bottom of my heart, THANK YOU SO VERY MUCH. xx

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23 Replies

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  • (((Hyposucks)))

    You seem to be doing really well all on your lonesome just reading posts and taking stuff on board and helping yourself. Top bird ;)

    I wouldn't counsel looking for problems but you might want to make sure that Vitamin D ferritin and folate are all in the top third of the range in addition to what you've had done. Your T3 is low but that may improve after you've been on levo a little longer.

    Welcome :)

  • Rapunzel

    Thank you for your encouraging words. It's all so scary at the beginning and still is a year on. From the same set of results:

    Red cell Folate 546 (nmol/L 285.4 - 1474.7)

    Ferritin 104 (ug/L 13 - 150)

    Vit D 118 (nmol/L 50 - 200)

    Your top bird remark made me smile. How did you know I used to keep chickens? I miss them now we've moved.

  • The following link might be helpful. As long as levothyroxine is raised high enough to relieve all of your clinical symptoms you will be on the right dose.

    web.archive.org/web/2010103...

  • Shaws

    Thank you so much for that link. It is so informative and helpful.

  • Well, you do know you have Hashi's, don't you? So, yes, the odds are, it is going to get worse. And, you really need to keep your TSH suppressed, to suppress antibody activity.

    How much levo is enough? How long is a piece of string? You need what you need, and only the way you feel will tell you that - along with blood tests for guidance. Do you take selenium? Have you tried a gluten-free diet? Are you doing anything about that low B12? Have you been on iodine supplements? That is awfully high.

  • Hello, are you in the medical field? I was just wondering.

  • No, not at all! lol Just the voice of experience speaking. :)

  • greygoose should be on the medical team when the NHS is discussing treatment for those suspected/diagnosed of being hypo. :)

  • lol Yes, I'm sure they'd love that! :)

  • This forum would love your daily responses to those 'in charge'. :)

  • lol

  • They might not greygoose , but we would love it.

  • :D

  • greygoose

    Hyposucks had an Active B12 test, not a serum B12 test, and her result is actually over the range, rather than low.

    I must admit I didn't realise either, until I saw the unfamiliar reference range. :)

  • Oh right! Sorry about that! :)

  • Greygoose

    Phew, you had me worried there for a moment. Glad I read down on Humanbean's reply. It made me question though about the serum B12 test. Looking on my haematology results there is no word 'serum' B12, so I shall ask The private Doctor about that at the end of June. I did go gluten free for a while waiting for the results but they showed I was not gluten sensitive. I was taking a Woman's 50+ multi vitamin supp at the time. They contained Iodine 150mcg, recommended two soft jells daily. Gee, you take these things thinking you're doing yourself some good but in reality probably doing more harm to yourself. Needless to say I don't take them anymore.

  • Sorry about that. :(

  • Greygoose

    No probs.x

  • Reading your results, I noticed that you are positive for Intrinsic factor antibodies which indicates Pernicious Anaemia. Although it doesn't look as though your folate has been tested. Hasn't your doc mentioned anything about treating this with B12 injections. It could also explain a number of your symptoms. Have a look at the pernicious anaemia society website. Lots of helpful info and symptom list. There is also the pernicious anaemia forum here on health unlocked for advice.

  • Singoutloud

    My Grandmother died when I was a small child. She had Pernicious Anaemia and bowel cancer. My Red cell folate at the end of January was 546 (nmol/L 285.4 - 1474.7). The doc did say I was okay at the moment but because of family history I was going to need B12 injections eventually. Thank you for the heads up on the PA website and the forum. I didn't know either of them existed. :)

  • I hate the wait and see attitude of doctors, to be honest I would push for injections straightaway but I'm no expert. There's lots of knowledge on the PAS forum so may be best to ask the question there. Some neuropathic symptoms can cause permanent damage if not treated. I've been on 2 monthly injections for the last 16 months, supplement heavily and self inject and still have symptoms of neuropathy.

  • Singoutloud

    Sorry to read of your condition. I had a hurried look at the PAS this morning. You're right, so much knowledge and lots to take on board. I shall make an appointment today to see my GP. Many thanks.

  • Hope you you get it sorted. It won't be a quick fix but hopefully you'll be heading in the right direction. ☺️

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