I am on 100 mcg of Levo and have been since April. I have 210 mg of Ferrous Fumarate which I take 4 hours apart.
I think I must have been undiagnosed for 4.5 years as I had a very sore throat 10 ( I couldn't swallow and went to the GP ) days after giving birth to my son and then gradually developed all the symptoms of hypothyroid. Hair loss, anxiety, bowel problems, fatigue, dry skin, brain fog. I had multiple trips to the GP with all the symptoms and no blood tests . Eventually my partner left leaving me with 2 small children citing our different energy levels and my struggle to keep the house organised and work. I had to reduce my work hours as I was struggling to work my contracted hours due to fatigue. I was diagnosed using a Thriva test and my TSH was 60 and my T4 was 4.5
My GP's have been defensive and unhelpful. I was hoping to feel a lot better but I have only felt about 20 % improved. I still have fatigue, brain fog, an itchy scalp, hair loss. My latest results are below:
TSH 0.32 mIU/L (0.35-4.5 mIU/L)
Free T4 15.3 pmol/L (11-24 pmol/L)
Free T3 4.8 pmol/L(3.9-6.8 pmol/L)
B12 594 (180 -2000 ng /L )
Folate 13.1 (normal 3.1-18.3)
Ferritin 24 (13-150 ug/l)
Haemoglobin 114 (120 -150 g/L)
Haematocrit 0.344 (0.37-0.47 )
I keen to know what might help ?
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Discodiva1
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Your Ferritin level is way too low. It needs to be optimal (along with optimal levels for all nutrients) for thyroid hormone to work properly. It's recommended that Ferritin is half way through range, so that's about 82 with that range.
Your haemoglobin and haematocrit are also low suggesting anaemia. Have you had an iron panel to see if you have iron deficiency?
Is your ferrous fumarate 1 x tablet? Do you take it with Vit C to aid absorption?
You can help raise your Ferritin level by eating liver regularly, no more than 200g per week due to it's high Vit A content, also liver pate, black pudding and other iron rich foods.
Folate is good.
B12 not too bad, it should be at least over 550ng/L,which of course it is, although around 900-1000 is recommended.
Thanks Seaside I will concentrate on trying to improve my iron levels I am on tds 210mg and have started red meat over last 3 months. I do take vitamin C regularly. I didn't get a vitamin D level I forgot to ask for that. I am surprised they did T4 and T3 as it was an NHS test.
Gosh. You must've felt desperately unwell. It must've been terribly difficult for you with such a lack of support.
I am pleased you're on the road to recovery, because you are, even if it doesn't feel like it sometimes!
Your FT4 and FT3 are still low in range. Most on levo need these to be around 75% through the range to feel well. Your FT4 is 33% through and FT3 is 31% through.
Thankyou geworgie.........I wasn't sure how to calculate % through range so that is helpful. I suppose if I focus on increasing my iron levels perhaps that will need to happen first. If that doesn't help then maybe looking at dose and maybe T3 but I am aware my CCG are very anti prescribing this so I might have a battle. I actually work in a hospital on a cancer unit and I am so shocked at the lack of help and support available for patients with thyroid problems within the NHS. Thank goodness for this forum!!
I'd go back to the GP and request an increase in dose as soon as you can. Working on your ferritin will help too.
Others are far more knowledgeable than me, but it looks like you've got scope to try and improve your levels on levo before thinking about T3. As you say, getting T3 is a real battle so maybe focus on the easier solutions first.
It's just absolutely criminal the way thyroid issues are dealt with. My GP would've left me in 75mcg of levo, without this forum is have accepted it and just assumed that this was my lot and I'd never feel better.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Ask for ultrasound scan of thyroid
20% of Hashimoto's patients never have raised antibodies
Ask GP for 25mcg dose increase in levothyroxine or, 12.5mcg dose increase if they are reluctant to increase by 25mcg
You can take 100mcg and 125mcg alternate days
Which brand of levothyroxine are you currently taking
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Agree try for 25 increase. This ought to make a good difference. I'm all for flanneling docs... so I'd say thanks for helping me on the way to getting my thyroid fixed, I'd appreciate your support a little further to get my levels higher in the ranges... as you know this can often be the way to help patients manage symptoms... blah blah. All to try to avoid them feeling defensive! I'm not being sarcastic! I'd really do this. Good luck x
Thankyou I spoke to my GP this morning and he felt that I needed to stay on the 100mcg of Levo as my TSH was too low....he nearly reduced my dose. He also said that my T3 and T4 were in range and so my current symptoms were not related to my thyroid disease.
I honestly think if I had played a game of letting them think they had diagnosed me I might be in a better position in terms of getting help. I was diagnosed using a Thriva test.
I have agreed to continue to try and improve my iron levels. I take accord as I had a bad experience with TEVA and northstar.
I am on a gluten free diet which is a good thing as there are less carbohydrate containing foods I can eat and hopefully it will help me with the weight loss.
So you will likely need to see endocrinologist to get dose increase in levothyroxine
Email Thyroid UK after New Year for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
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