Edited newbie diagnosis

Hi everyone, so thankful to have found this site, like everyone the story is long, here's a ( hopefully) 😄 short history;

Diagnosed with Hypothyroidism in March 15' I have had all the recognised symptons for a number of years, however age (51) and with life challenging events ( bereavement etc) I was distracted from ' the root cause ' of why I was feeling so unwell. I assumed peri menopause grief and chronic stress were the reasons, last year I suspected something else as increased symptoms of migraines, stiff shoulders/ neck, nose bleeds, chest pain, inflamed lump in throat sensation, blurred vision, brain fog, hair loss, anxiety, mood swings, but continued using naturopathic approach of vitamin and mineral support alongside alternative therapies. I suspected thyroid issue but was caught in a cycle of denial. Jan 14' went to A&E severe chest pains all tests done, given all clear. Feb 14 severe migraines ongoing prescribed meds but didn't help so stopped. Feb took up swimming to improve health. April I requested Blood tests, results as follows;

March 25th

FT3 4.5 normal no action (3.90-6.70)

FT4 10.4 (12.00 - 22.00 )

TSH 4.00 normal no action.

Thyroid autoantibodies 109 (34.00)

Vitamin D 25-OH severe deficiency

Serum Ferritin. 30 ug/l Normal no action

Serum folate 10.8 ug/l normal no action

Serum FSH 87.8 post menopausal

Also had full blood count which didn't highlight any concerns, the GP said I was subclinical and to monitor, suggested I take iron and vitamin D. I advised I would access this myself. I asked for a referral to check lump in throat/ neck region. I found a nutritionist specialising in endocrinology as i try to follow a naturopathic approach to health. Started on food elimination diet following protocol for intestinal permeability removing Gluten, Diary, caffeine and as much sugar, alcohol and started supplements, vit D2 D3. Food enzyme, probiotic, cod liver oil, evening primrose, multi vit/ selenium. Some symptoms reduced however extreme reaction after swimming, hives to neck torso and severe blistering around lips, mouth chin, GP/ nutritionist advised now ige allergy to chlorine, bromine. Left 6 wk gap and same reaction to particular swimming pool.

April; ENT ultrasound diagnosed small 5mm nodule left side and said didn't present a concern, also grazing to thyroid gland in line with a previous inflammation and Hashimotos.

April back to see different GP to discuss and who said she felt I should be taking medication as would only worsen. I advised of dietary changes all of which were dismissed alongside my concerns about neck/ shoulder stiffness and links to osteoporosis and thyroid issues. Again I was fearful of starting meds so continued dietary protocol. Agreed to monitor til may.

May 28th blood results;

FT3 not tested

FT4 11.6 low

TSH 5.50

Thyroid autoantibodies not checked.

Ferritin 22ug/l slightly low

Vitamin D still deficient ( can't find paperwork for exact figure)

GP requested cortisol / pituitary blood test.

June 3rd blood results; (I had to request FT3)

FT3 4 normal

FT4 12

TSH 4.3

Thyroid autoantibodies not checked.

Cortisol normal range ( can't find paperwork)

I started taking 50mcg Levothyroxine 5th June severe chest pain, palpitations, thumping heart, One week, reduced to 25mcg, still chest pain, and all other symptons on/ off erratic so reduced to alternate days.urinating more than usual. In some senses I feel better, in other ways not. I feel like I've fallen down a hole and am struggling to get out. I feel isolated and very low at times. In hindsight I believe I was hyper back last year as had lost weight also. On discussion with GP she suggested lump in throat was probably ' globulas ' more psychosomatic and imagined because I am so focused on my thyroid issue. Next blood test 10th August.

I have read extensively, Dr Kharrazian, Isobelle wentz, amongst others and look to a naturopathic approach as much as possible, using acupuncture, and healing. Taking this medication doesn't sit well with me, the obstructive nature of the health care system is all too familiar, bad experience with terminally ill mother, passed away 2012. I trained in Social Work and know how medical model of ill health, causes and treatment does not treat a persons health and wellbeing holistically. I currently work in social care dementia/ Alzheimer's, part time, giving up night work since being diagnosed. I would love some advice on accessing a natural thyroid product, possible referral to Endo, finding better informed GP, to hear from others with the disorder, some guidance and support. And likewise to offer it. I don't won't the label of having a 'disease' I just have a condition that means I have to learn to take better care of myself, something I've neglected to do for a long time.......

I know, I said I'd keep it short.........sorry😗

And a Big Thank you so much for reading 😄 and such immediate responses 😄

7 Replies

  • I'm sorry you are having the 'run-around' like so many members on this forum - and even not on the forum if they don't have the internet.

    At least your doctor has prescribed levo and I quite understand how you feel when it hasn't worked for you so far. Sometimes it's the filler/binders in levo which is the cause as 'thyroxine' itself is orthomolecular to our bodies and should not cause a problem.

    If you ask your chemist for another levo by another manufacturer, maybe that will help - yet again it may not.

    If you email louise.warvill@thyroiduk.org.uk who has a list of sympathetic doctors and if you choose one you can put up a new post mention the doctor's name and asking for a private message to be sent to you if he has been seen by a member. We aren't allowed to put any info on the forum about doctors or endos.

    Sometimes palpitations and the feeling of being very unwell can happen in the initial stages of levo so it might be o.k. to take 25mcg for a few weeks so that your body can adjust. Taking too low a dose can have a rebound effect and we can feel worse. You should have another blood test after 6 weeks to see what effect it is happening. If your vitamin D is deficient the doctor should have prescribed. If he hasn't done B12 ask for that too as it can also cause problems.

    I hope you feel better soon but at least you know that you can read and learn how best to try to get back to more or less normal health. If you take Vitamin C with levo (there's a powdered type which you can buy and you only need 1/4 teaspoon in water) it helps to convert T4 to T3.

    I hope you feel better soon.

  • Thanks for the advice, I think I have been taking levo and other supplements too close together , and have now reviewed esp the vit C with levo tip. I'm due my bloods again on mon and docs on fri, should I omit the levo on Monday prior to the blood test ( no take mine in the morning)

    Many thanks😃

  • Yes, that's correct don't take levo on the morning of the test ( approx 24 hours gap between levo and test which should be as early as possible (TSH is hightest then and may make a difference if GP diagnosis by TSH only).

  • IM new to all of this, I am only starting out, I have rheumatoid Arthritis, for the last 30

    years. its so hard to know what to do. I take Levothyroxine 50 mcg. I'm on my first months of tablets. I thought it was my age 59 , but reading hear it might not be.my

    T4 level was 11-22.6 and thyroid peroxidase Ab conc 28-60 .my doctor said this is fine.

    Thanks 4444sweetbell.

  • Hi sweetbell

    You've put your posting on the end of someone else's. You are more likely to get a useful reply if you write your own post - there's an orange button top right of the screen labelled 'Write a post'.

    Put as much info as you can and your test results with their ranges - the numbers in brackets after each result.

    Good luck.

  • I didn't realise about the the top right button!

  • Good Advice from Anthea as your post might not get the amount of responses if you do your own new post. I'm sorry you also have R.A. a very debilitating disease itself. For blood tests for the thyroid gland, always take levo first thing with a glass of water and wait about 1 hour before eating, as some foods interfere with the uptake. Take other supplements/medications around 4 hours later. When your next blood test is due, make the earliest possible appointment and leave approx 24 hours between levo and blood test. Always get a print-out of your results, with the ranges. Labs differ and it makes it easier to comment on them. If you've not had a Vitamin B12, Vit D, iron, ferritin and folate test ask for these as well as we can be deficient.

You may also like...