I recently requested in Sep to have my VIT D levels checked as I recognised some of the symptoms from when I was deficient. And for some reason my levels had dropped so started 5 weeks ago to take a twice weekly loading dose for 8 weeks.
I still felt ‘off’ and requested for my Iron levels to be checked. I was informed it’s satisfactory - No actions needed .
NOV 2023 FBC and Iron bloods
Iron Studies SATISFACTORY : Serum Iron level 12.2 umol/L ( ref 11.00-32.00umol/L)
Transferrin level 3.2g\L ( ref 2.00-3.60g/L)
TIBC 80 umol/L (ref 45.00-70.00 umol/L)
Percentage iron saturation 15% ( ref 15.00-45.00%)
BUT I’m still suffering with extreme coldness to the point I am too cold to even fall asleep despite layers / heating etc. Constantly being even more exhausted and getting terribly breathless by the slightest thing ie sitting up in bed, putting on my trainers, taking a sweater off. I also am obsessed with ICY COLD drinks and crunching the ice cubes all whilst wearing 5 layers and having a heated blanket 🤦🏻♀️🤣
I’m concerned about my TIBC levels which are in red on the results and is over the ref range. My TIBC 80umol/L (and the ref range is 45.00-70.00umol/L)
Not really sure how to proceed and would really appreciate some advice that I can write down and use when I finally have my telephone consultation in 2 and 1/2 weeks.
Thanks everyone
PJ/ Philippa
Xx
For reference my health info
Taking 50mg daily for myThyroid
Recent basic thyroid bloods only tested for TSH
Sept ‘23 TSH was 2.12 ( ref 0.40-4.50)
Nov ‘23 TSH 3.48 ( ref 0.40-4.50)
VIT D ( sorry I can’t seem to find my ref range for my area )
Nov 22. - 51.9
Oct 23. - 36.2
Receiving b12 injections every 12 wks despite ongoing neurological issues:
B12 ref range 145-910ng/L
Jan 2021- 458ng/L
NOV 2023 - 463ng/L
Started 4 months of Iron tablets in Aug 2019. (Ferritin ref range 11-307)
2017 Ferritin 27.5
2021 Ferritin 55
Nov 2023 Ferritin 99
I previously had to spend months arguing with my GP over my B12/ Vit D and Iron results before I was finally given any treatment. Any advice on my TIBC levels would really help if I need to argue my case for Iron tablets. Thanks again. PJ
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I think the biggest thing that stands out is your TSH is over 2, which to be honest would be expected with what’s considered a starter dose of 50mcg.
On levothyroxine, TSH has to be 2 or under with most people expected to feel better when it’s around one.
I think it’s your thyroid that needs addressing to hopefully solve what appear to be typical hypothyroidism symptoms.
TIBC, high in range means there’s a need for additional iron. However, iron is a complicated area and needs to be considered alongside all the iron studies and for someone who is more knowledgeable than me to comment on it.
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
guidelines on dose levothyroxine by weight
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
SD I am interested to know and need a bit of clarification please. When you say about the dosage *to the nearest 25mcg* do you mean the nearest going up or down with the thyroid dose? Thank you so much in advance.
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Thank you so much for all the links and info! If it’s not one thing it’s another and all the symptoms are so similar it can be so confusing.
I’ve asked before on my tele consultant with the Endo about increasing my thyroxine but he was happy with my levels and didn’t see why I needed it increased. I was supposed to have an annual review but I think I have fallen off the schedule.
most endocrinologists are diabetes specialists and useless for thyroid
50mcg is only STARTER dose levothyroxine
Make an appointment with GP
Request increase in levothyroxine to 75mcg
Which brand of levothyroxine are you currently taking
Approximately how much do you weigh in kilo
Guidelines are quite clear
Dose levo should be increased until on full replacement dose…..typically around 1.6mcg per kilo of your weight per day
So unless extremely petite most people will be on at least 100mcg per day
If GP won’t increase Levo
Here’s link for how to request Thyroid U.K.list of private Doctors but also list of recommended thyroid specialist endocrinologists who understands this
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
I’m on Mercury , unless the chemist can’t get hold of it. But it’s a requested brand on my notes and they are really good about getting it in.
Erm I am petite in height but no longer in weight 🤦🏻♀️. I would say I am at least nearly 2 stones overweight. Such a struggle to actual lose anything.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
For years I suffered with feeling constantly cold and cold hands/shivers down my back even though it wasn't cold. I gave up with my GP and discovered it is a symptom of thyroid issues and T4. I was prescribed T3 by a private doctor to take in combination with T4 and the symptoms improved dramatically. Why not insist you see and Endo. It may work, but be warned that if you are in the UK the NHS goes out of its way to prevent prescribing T3 because of the cost. It's all about drug companies making huge profits here. T3 costs just 3 euros for a month's supply in Greece and Turkey. In the UK it costs over £100 on a private prescription. It's cheaper to pay for a holiday to Turkey/Greece to buy some!
As I responded to PJ, it’s disgusting that it’s pharma/money first in a national HEALTH service and you saying it’s cheaper to buy in Greece and Turkey just highlights this “game”, thanks for exposing that! Too much is accepted these days rather than people fighting for their rights and needs. It makes me angry!
It's an absolute disgrace. Some doctors have established successful private practices, prescribing T3 and others in the UK and wouldn't want T3 to be made readily available. And in Greece Pharmacies are now telling UK tourists they are completely sold out. One pharmacist told me that the supplier is allocating all of its stock to the UK where they make huge profits.
Thank you for your reply. My feet are like ice blocks even with thermo socks etc . Have always had freezing cold feet and hands , Althou one side is often colder than the other . I will deffo be pushing to have a referral back to see an Endo when I finally get my tele consultation.
I do like your idea of going abroad for some meds. A little holiday in the sun and cheaper meds sounds great esp at the moment.
It’s crazy how cheap T3 is abroad same for B12 I believe?
sorry you’re having such a hard time I’ve nothing much to add to the very helpful and full responses, I just wanted to encourage you to keep rattling the nhs cage because it is so awful we are treated this way … as I keep saying these days re the nhs money first, Health after and that is totally unacceptable. There’s a pressure group in Norfolk I believe that had managed to get their area to prescribe T3 again. I’m currently seeing a private and expensive doctor switching to an NDT but once balanced I’ll be taking on the nhs as I cannot afford the ongoing cost for the rest of my life. We need to make a stand and lots of noise. I’ve just bought some Three Arrows iron as I’ve had iron issues most of my adult life, my ferritin is currently 28 partly why I feel so awful I believe! Good luck! 💜
This community is the best, despite everyone here suffering in different ways , people here still take the time to try and help & advise and no one is ever judgy or tells you to take a walk for fresh air.
When every day little things drains you of any energy you have it means a lot to have these messages.
I had similar symptoms of iron deficiency to yours. Plus some neuropathy in legs thumbs and tongue. My GP said I was ‘slightly anaemic’ but did not prescribe iron. She said I would need another blood test in a months time.
I decided to take matters into my own hands and bought some liquid Nano iron, [just Google.] very expensive, but on offer at the time. After just 2 weeks, I am improving slowly.
Apparently if you suffer any inflammatory disease, I have R A, you have difficulty absorbing iron. Hope this helps.
Thanks for your advice on the liquid Nano iron. I will deffo look into that if I can’t get help with iron supplements.
Glad that the Nano iron is working for you. Any improvement is a win win.
I also suffer from really bad dead : pins needles pain in my arms , again like the cold hands . My right side is affected more. To the point where some mornings, my right arm is soo dead/ numb with pins needles I can’t actually lift my arm , I have to use my left arm to move it. I put it down to my B12 issues as I don’t have that problem after my jab but once I have had that by week 4/5 it’s back again . I also have swollen stiff hands when I wake up, they are stiff all day but seem more swollen stiff numb first thing,so not sure if that’s R A. ?
hello I don’t know much about iron deficiency, what I picked up was you are only on 50 thyroxine I’m on h,unlocked thyroid and I’ve read that is only a starter dose , I’m sure if you were to go on there and put your thyroid results in they would be able to give advice, they are very good on there ,hope you get sorted
I have to admit as I am not used to this site I did have double check a few times to make sure I was a) posting to the right page and b) posting a query that made sense as I suffer from terrible insomnia so exhaustion and brain fog often results in me doing random silly things .
I’m sorry it was me I have both come through and must have looked at the wrong one , it was just when you said about thyroxine 50 I thought that’s just a starter dose , I’ll have to look properly in future, hope you get sorted
Thank you ! I wasn’t sure where to post my query , but ended up here as it seems our Thyroid is pretty much responsible for 90% of all the other conditions that we end up with! Well that’s how it feels to me.
Oh I have tried and tried to get daily injections to treat my b12 neurological issues . After my loading doses I still wasn’t feeling great and with the symptoms coming back and developing new ones , I requested to my GP to try the additional loading jabs . I had a list of all my symptoms and a print out of the guide lines recommending extra jabs for ongoing neurological issues but my GP told me he was too busy to listen to my list and he wasn’t prepared to give me the extra jabs. I tried a different GP but again was told no need.
I saw a neurologist and rheumatologist who both in the letters suggested I could try having extra b12 jabs to see if that would make a difference but still was turned down by my GP. They tested my b12 levels and said that as it had risen with the jabs no need except for every 3 months.
I have noticed that the last 2 blood tests at my GP they also tested my b12 levels which wasn’t discussed. So I am on alert and extremely suspicious incase they are trying to stop my jabs .
If consultants have suggested increasing your B12 and the GP is refusing, I feel there is something ethically wrong here. You could try writing and I mean pen and paper writing or email to leave a trail, and suggesting the GPS are going against advice from higher medics and how is that acceptable. I felt angry for you reading that. I wrote last year about something relatively minor to the practice manager and got a resolution. If you hint about taking this further I suspect you may get a better response…just an idea you may not have the energy for it .. 🤗💜
Thank you for the advice I’m going to have my tele consultation and request a in person consultation as well. I’ve been documenting some of my nerve issues/ swelling etc and how they improve after my b12 jab . So that will hopefully be the start of having a paper trail of requests and what actions the GP takes or doesn’t take. It’s soo frustrating and like you mentioned exhausting. It’s also soo hard dealing with the dismissive attitude when you ask for help. To be honest it kind of made me give up fighting for help.
The GP knows nothing about B12 deficiency and most don't follow what are quite clear guidelines for treatment. Treat the symptoms, not the blood tests, which of course will rise as soon as injections start, so testing becomes meaningless.
2 weeks is no time at all. A deficiency takes years to manifest itself and recovery is a long and slow process, it won't happen overnight.
I urge you to post on the PAS forum for support. Most of us self inject due to the lack of understanding of medics. We tailor our treatment to meet our own needs - one size does not fit all. You can do that and still have what they offer you.
Thank you for the advice I will deffo post on the PAS forum.
It was such a struggle to get the initial loading doses and with so many different things health wise going on, it’s hard to be sure if these symptoms are deffo from b12 deficiency or it’s something else. But I have been keeping a photo diary so I am hoping it will help with my case.
Anything to do with preventative care, B12 etc will be an uphill battle where GPs are concerned. They have no clue about biochemistry and will rarely advise correctly. Hope you get sorted!
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