My niece got diagnosed hypothyroid from bloods this January 2022 . Tsh 10 free t4 11.2 .
Then was put on 50 mcg thyroxine increased to 75 mcg then in
In July 2022 tsh 0.68
Free t4 16.1
And symptoms not much better .
So as I have been told by my consultant and by you fine folk . I thought thyroxine was increased till asymptomatic. Especially if room for manoeuvre in the blood results. As in free t4 is not top of range .
The consultant said to her . Your symptoms don't present like hypothyroidism.
She feels spaced out . Like she isn't here and like she could fall over .
I felt like this . No one questioned my symptoms ?
She has been discharged by ear nose and throat as no ear problems.
They did a brain mri instead . Which is normal thank fully and more bloods . Tsh and t4 . Also a t3 which were all normal range. But not seen results yet .
Any advice please.
My thoughts are ask for another consultant.
Or at least a diagnosis for her symptoms and none given .
They would not even try her on an increased dose and monitor .
Any reputable research or literature with her symptoms are shown as hypothyroidism would be very welcome
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So as I have been told by my consultant and by you fine folk . I thought thyroxine was increased till asymptomatic. Especially if room for manoeuvre in the blood results. As in free t4 is not top of range .
What were the reference ranges for these tests? I'm wondering how far into the range the FT4 is. Ranges vary from lab to lab, if that test was done at my GP surgery it would be at the very top of the range is the reference range is 7-17, but with many ranges seen here a level of 16.1 would be less than 50%.
Tsh and t4 . Also a t3 which were all normal range. But not seen results yet .
It doesn't matter that they were "all normal range", it's where in the range that matters. I think it would be a good idea to wait until the results have been made available, and ensure that the reference ranges are with them. It could be that she has low T3, it's low T3 that causes symptoms. Post results/ranges on the forum for comment when they're available.
Hi thank you for your reply . So kind of you . Reference range for free t4 was 11.5 to 22 . 7 .
Nieces t3 was 4.6 ( 3.5 to 6.5 ) and 0.49 to 5.23 was tsh range .
They didn't dispute niece was hypothyroid . They disputed that her ongoing symptoms were unrelated to hypothyroidism. They would not increase dose on tjis premise.
I pushed for a trial of increase . Saying there was wiggle room as t4 not top of range . But they worried for her heart on a higher dose .
But were adamant its not thyroiditis symptom .
Her spaced out dizzy feeling . I felt spaced out before I was optimised too. I told them this .
Is there any symptoms list that say tjis symptom so I can shove it in their faces please
You can see that her FT4 and FT3 are both low in range and in themselves suggest an increase in dose of Levo. Her TSH is in range so they can't argue that it's suppressed.
Is there any symptoms list that say tjis symptom so I can shove it in their faces please
SlowDragon has given a link to a list of 300 symptoms on hypothyroidmom in her reply below.
Thank you so much for this . I am going to show them this analysis thank you . So clear when you put it this way . Which I could not do . And dizziness is on that list by thyroid uk as you know . Does nhs give thryoid uk any credence . Do u know .
On the NHS website's page for Levothyroxine, if you scroll down to the very bottom you will see under "Useful Resources" a link to ThyroidUK's main website (they also link to this forum!):
Thank you so much . I am going to . You are amazing. I have just found out nieces b12 from January . It was 265 . ( range 211 to 911) . I am disgusted with them . Even more so . Consulatnat ignoring this as maybe reason for her symptoms .and not tested since . Going to get niece to go back to gp and talk to secretary of consultant . And if they won't give her q vit b injection then will have to buy good vitamin b tablets . Any recommendations please
I have just found out nieces b12 from January . It was 265 . ( range 211 to 911)
I think the unit of measurement for that will be pg/ml or ng/L (they are both the same), please check so that you know what I am about to say is correct. My surgery uses pg/ml (ng/L) and the range is 150-900. There is also pmol/L but the range is much narrower, often around 145-569, so with the range you have quoted above it's more likely to be pg/ml (ng/L).
According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Your niece's result of 265pg/ml is very low and only just 7.71% through range. Considering that someone with a level of 900 would still be classed as "normal" you can see how ridiculously wide the range is and the person with a low result will feel very different from a person with a high result. This is why checking symptoms is so important. Many people with a result in the 300s have been found to have B12 deficiency and need injections, and guidelines say that doctors should take symptoms over test results where B12 is concerned. However, apparently B12 is treated as poorly as hypothyroidism by doctors and just as misunderstood.
And if they won't give her q vit b injection then will have to buy good vitamin b tablets
It gets a bit complicated. If she has symptoms pf B12 deficiency, and especially with such a low B12 result, she really needs testing for B12 Deficiency and Pernicious Anaemia. If she has PA - which is an autoimmune condition which affects the stomach - then this means she can't absorb B12 from food and B12 injections are needed for life, she may not be able to absorb B12 oral supplements well enough.
She also needs Folate testing because B12 and folate work together. If her folate level is low or if she is folate deficient she should not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency and it is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.
So in a nut shell:
* test for B12 Deficiency and Pernicious Anaemia
* test Folate
* if folate is low or deficient do not start folic acid (or folate supplement) before testing for B12 deficiency
* B12 injections or supplements should be started before folic acid (or folate supplement)
By the way, there is a calculator to work out percentages here:
Even though it shows the thyroid tests, you can actually use it for any test results as long as there is a range (and you don't need to put the units of measurement in).
B12 was 265 . ( range 211 to 911) . I am disgusted with them . Even more so . Consulatnat ignoring this as maybe reason for her symptoms .and not tested since
Clearly B12 far too low
This is classic case of it being ludicrously low ….But because range in U.K. is too wide …..result is ignored
Is she’s a vegetarian or vegan?
Essential to retest B12 with folate and also get tested for Pernicious Anaemia BEFORE starting on B12 loading injections
Or if injections denied she will need daily B12 supplement
Also
Insist that full iron panel test for anaemia including ferritin done too
Hi thank you for your reply . Sorry my confusion . They did recognise the tsh of 10 as hypthyroidism. Its now that the tsh is 0.46 since treatment . That they won't increase thyroxine. Even though free t4 is less than half way in the labs range . And the tsh is not below range .They are saying her dizziness and spaced out feeling are not hypothyroid
Thank you will get latest results off her doctor . And the normal ranges for that hospital . The consultant believes she is hypothyroid and has diagnosed her happily . Just does not belive however that her symptoms that remain still are thyroiditis symptoms .
Is there any literature to support dizziness spaced out feeling as a symptom please
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.
Maybe it is the thyroxine (levothyroxine) that she is currently taking for the thyroid condition that is making her feel “spaced out” and “about to fall over.” Also, if she is perhaps taking other prescription medications for different conditions, check the side affects of any of the other drugs, too. Medications can cause side effects! And maybe she will do better if prescribed a natural medication for the thyroid condition like Armour instead of the synthetic thyroxine.
I would certainly try NDT, because, as someone commented above, all drugs have side effects. There are other forms of NDT other than Armour, and it is possible to buy them privately without a prescription. Armour is actually very expensive and not necessarily the best either. Vitalithy have just brought out a new NDT which is comparatively inexpensive.
Altlants69 you may ? need to edit this post to remove the web address.... as the forum's rules don't allow us to post details of where to buy prescription only medications without prescription, on the public forum .. you can share them using the private message/ Chat facility.
Not sure what to make of the advert for this product ... it clearly say it is an NDT .. and it clearly says it does contain T4 and T3.... which i think ? means it comes under the category of a prescription only medicine in UK .... but then they go on to say it's not a prescription medication just a supplement .Don't know where this leaves them legally as regards sending to UK customers. SeasideSusie helvella RedApple ?
Also just noticed each grain also contains 10mcg ashwaganda... dont know how big a considereation that is ?
' says it does contain T4 and T3.... which i think ? means it comes under the category of a prescription only medicine in UK'
If it's claiming to contain hormones, then yes, it's not an OTC as far as the UK is concerned. Same principle as Thyroid-s. Not prescription only in the country of origin, but it would be here.
No, that isn't correct. Anyone is free to import NDT for their own use, and you don't need to obtain a prescription in order to do that as it is not a prohibited substance. You just need to find an organisation that will send it to you, and these do exist. If anyone would like to know the name of an organisation that will send you Armour, I can provide that.
Atalanta69, 'No, that isn't correct. Anyone is free to import NDT for their own use, and you don't need to obtain a prescription in order to do that as it is not a prohibited substance. You just need to find an organisation that will send it to you, and these do exist. If anyone would like to know the name of an organisation that will send you Armour, I can provide that.'
You appear to be new here. Please read our forum posting guidelines.
28. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.
It is factually incorrect to say that NDT is a prescription-only medicine, when it is perfectly legal to import it into the country for personal use without a prescription. This was confirmed in a letter from the Medical and Healthcare products Regulatory Agency (MHRA) to the Thyroid Patients Advocacy group years ago, and the regulations have not changed since. The only stipulation is that it must be for personal use, so importing more than 3 months supply is ill-advised.
This doesn't change the fact that by posting the source information on forum you are transgressing forum guidelines.
I repeat: 28. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription.
Medicines / supplements containing thyroid hormones are classed as prescription only medicines in the UK.
'Not sure what to make of the advert for this product ... '
It's flipping expensive at £128+ for 250 1 grain capsules! And it contains things I don't want in my thyroid meds (Spica Prunellae siccus (Self-Heal) extract, Ashwagandha extratc, Selenium yeast).
I get the feeling this vendor is trying to take advantage of desperate thyroid patients, and for that reason alone, I wouldn't trust the medication or the vendor.
Atalanta69, On this forum, we are very aware of the alternatives to Armour. The price for the product you're discussing is actually extremely expensive compared to Armour.
a little poking around reveals that an 'NDT logistics expert' on linkedin (who has the same name as the 'thyroid patient since 2014' who has written most articles for the website selling this product) ...... is sharing articles on linkedin promoting it quite heavily .. which clearly state it contains 38mcg T4 + 9mcg T3.
interestingly .... the afore mentioned thyroid logistics expert was trying to sell coal dust to permaculturalists to improve their soil in 2014 ... along with a book he wrote about it ... and some rock dust from quarry .... oh... and an article about how you can feed pigs on cow manure ...... permaculturenews.org/2014/0...
I'm now as convinced as I can be without actually buying and taking the stuff that it's a scam. I hope the now 'hidden' poster wasn't a genuine patient that's got sucked in by it.
nah ..i thought hidden displayed a super-extra-quick grasp of the precise import laws for NDT ...
so i 'm just leaving a quote from the linkedin profile of the person i mentioned earlier, here for general contemplation.
"I am a Natural Desiccated Thyroid logistics expert. I work hard to ensure that .... are shipped and delivered smoothly, without any problems. I also deal with customs and duty issues related to these products (before they even happen!).
My super-extra-special level of expertise is with logistics and custom duty stuff of ...... products within the European Union....."
Thank you i will see what brand she is on. The dizziness and spaced out occurred before she was started on levothyroxine though . She wasn't on any medication then . Except an anti depressant
If she/they have got to the point of being on levothyroxine then demand an endocrinologist appointment, it needs a specialist appointment, thank the GPs for finding a problem in the bloods but now it can be seen that there is an endocrine problem it needs an endocrinologist because GPs don’t know enough. Demand it!
Sorry forgot to say this was the consultant . They accepted she is hypothyroid but don't recognise her outstanding symptoms as a hypothyroid symptom .They say the dizziness she has felt every day since just before being diagnosed is not a hypothyroid symptom .
B12 is 265 and range is (211 to 911) thank you so much . That was January. Noece just show me with you asking .so thank you so much . Will push for an injection and re test and tablets at least . Can't believe they haven't retested or treated her with her symptoms. Thank you so much
If its bottom of range and not below range though . I presume I will have a battle getting her any treatment . Is there any guidelines for this I can shove in their faces sorry . And just checking all other answers in case you have written answer already
Vitamin B12 level — interpret the results of the serum cobalamin test taking into account clinical symptoms, other laboratory findings and the following limitations:
The clinically normal level for cobalamin is unclear, although it is thought that serum cobalamin of less than 200 nanograms/L (148 picomol/L) is sensitive enough to diagnose 97% of people with vitamin B12 deficiency.
Cobalamin levels are not easily correlated with clinical symptoms, although people with cobalamin levels of less than 100 nanograms/L (75 picomol/L) usually have clinical or metabolic evidence of vitamin B12 deficiency.
The Pernicious Anaemia forum here on HealthUnlocked may be able to help further:
You will need to ask on the Pernicious Anaemia forum about where to obtain B12 injections, they can discuss that on their forum but as it's a prescription item in the UK we can't discuss on the thyroid forum as our guidelines don't allow it.
Thank you so much . I am going to get some and my niece . Thank you for all you have done for us . You are very kind . And now we are going to get earlier appointment bqck with the consultant . But lab did tsh and not the free t 4 . So another battle . Vitamin b12 was done again and tjis time its 15 percent into the range . In January it was 7 percent into the range Jan 2022 vit b12 265 ( 211 to 911)
Dec 2022 vit b12 311 ( 211 to 911 )
Thank you i will ask on pernicious anaemia site.
Her iron stores are also low end of normal. So yeah making sense towards . Pernicious aneamia
I too have had those symptoms, I felt spaced out, lack of concentration, lack of balance and special awareness. I took things into my own hands and increased my levothyroxine to 100mcg but still didn’t feel great. Saw a nurse practitioner who wouldn’t increase my thyroxine but doubled my HRT!
This triggered migraines every day, so I have gone back to my normal dose but I have increased the thyroxine to125mcg and feel so much better, even though my grandson has given me his cold.
As a staff nurse I was totally unaware of the symptoms of hypothyroidism so I started reading up on it. I also decided to check what the N.I.C.E guidelines were, they recommend a starting dose of 1.6 mcg/kg body weight, this information I used during a consultation to increase my levels. I also told them they are supposed to treat the symptoms not the blood results.
Maybe her doctor would consider a trial of a higher dose.
My mother and my niece both have hypothyroidism and both are symptomatic as under treated. Why won’t doctors recognise these symptoms? My poor mum has just been told by her doctor that there is no evidence supporting the claims of symptoms and her thyroid level is normal even though it is at the lower end of the range.
Why will doctors not listen to their patients, I think we know our bodies better than they do.
Thank you so much . I am so sorry you went through this .it took years of battling for me also to get on right meds. I am now on liothyronine as levothyroxine did not raise my t3 levels into normal range . Thank you for the nice guidelines bit about the dose per kg . That's very interesting. And would suggest a dose of at least 110 for my niece . She is only on 75 mcg at present .
We are not giving up . We will get her with the consultant I am under and or thyroxine dose increased or / and a vitamin b12 injection . As her vit b12 is only 8 percent into normal range .
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