So I was eager for my first appointment with my new primary care today, but now I am disappointed. I went into the appointment with a plan, I asked for the blood tests that you guys suggested and she just shot me down. She said my TSH didn't warrant a thyroid antibody test because my "TSH is under 10" and "the recommendation is the same whether you have Hashimoto's or just hypothyroid." My TSH is 5.31 with a normal range of .5 - 4.5. She also told me that there are new regulations around Vitamin D levels and the new normal for women is 20 and above. So even though I am at 14, its close enough to normal that a standard daily vitamin D pill will suffice and I do not need to get it retested for a year. Also, because my B12 was within the normal range 6 months ago, even though is was at the very very bottom of the normal range, she wont be requesting it to be tested again until a year has gone by. Same with my folate.
I just feel defeated, I was sincerely hoping that changing my primary care would result in better more qualified and patient first care. Now I am not sure what to do. Change PC’s again until I find one that will listen and care about my wellbeing?
Any advice would be wonderful!
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Brightfuture22
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My TSH and Vitamin D are abnormal, but the doctor wasn't concerned. My B12 is within the normal range, but if you have thyroid problems it's better for your b12 to be higher, from my understanding.
Hmm. Well they are professionals if they werent concerned you should be worried. Are they doing any further tests for those two that are abnormal? And when did you get a test showing they were abnormal
If you have blood test results for TSH/T4/T3 and vitamins B12/D/Ferritin and Folate with ranges then put them on the forum so we can see them. If your Dr is unwilling to test all the above then you may have to consider private testing as a lot of members do. Are you currently taking Levothyroxine and if so, how much?.
I posted my TSH/T4/T3 and vitamins before. They haven't changed since then because I haven't been able to recheck them. The new doc is willing to retest my TSH, but that's it. I am not taking Levo as my previous GP said 5.31 TSH doesn't warrant taking thyroid medicine and that my symptoms (hair loss, anxiety, cold when I used to run hot, exhausted) can be attributed to a myriad of things, not just thyroid.
I think "fobbed off" is what your GP is doing to you. It's a long hard road we are travelling for most of us on this forum, Doctors who know nothing about the thyroid or the problems we have when it goes wrong but are treating us and just using TSH to do so? I have been on this path for over 30 years and have had more help from this forum than any GP.
It's so terrible. you would think that doctors and NP's would understand that not every ailment is "textbook" and therefore needs to be addressed individually. I am so glad that I found this forum, it has already helped me!
Yes it's awful the way we are treated, any arguments are dismissed by the GP because they know best - sorry but for this disease they know nowt, people on this forum know more. Unfortunately most Endo's are also useless as they are diabetic specialists so that avenue is a waste of time unless you look at the list of helpful Endo's which can be provided.
It's also interesting that some normal ranges are ignored (eg over range TSH or under range folate), but others cause GPs to have kittens - over range cholesterol or under range TSH, for example. None of it makes any logical sense.
That is so true. My GP looks at my below range TSH and immediately tells me to reduce my Levo- doesn't look at T4 and T3 never tested( except privately by myself).
Over range cholesterol and they’re pushing statins; feeling like death with hypothyroidism and you have to be off the scale before they prescribe anything.
On a separate note...heart attacks are rising; statin use is rising; diabetes is rising. A link, perhaps?
When my tsh was around 5.3 ( which despite what Mike says is not normal), I felt terrible. I was losing my hair, I was sickeningly tired, cold, anxious. So I had my t4 level tested and it was below range. This ‘wait for tsh 10’ thing just isn’t true for everyone! Luckily my lovely doc put me on thyroid meds. Are you actually diagnosed hypothyroid?
Ps others on here will have very different ideas about good vit D and vit B12 levels than your doc. Try one of the admin team.
I have not been diagnosed hypothyroid even though my levels have been above normals for over 2 years. My previous doctor said that I am "subclinical hypothyroid" and that the best plan is to watch and wait. I believed her because I knew nothing about thyroid issues and assumed she knew what she was talking about. I am thinking that I will buy some B12 and Vitamin D and take them myself, rather than rely on what the new GP said in regards to them.
Have you found that the Levo is helping you with the symptoms that you had when you were are 5.3 TSH?
It’s frustrating for you, because your thyroid appears to be struggling but because it’s just about coping, docs are reluctant to take action. You might find a bold medic who will help you now, or you might have to wait a little longer until your t4 or t3 dip below normal range. 😬
Yes agreed. I think that the 'wait for tsh 10' thing is not true for everyone. I had several appointments with various GPs before being seeing a more 'sensible' GP who gave me a prescription for levo. My TSH was 9.8 and I was very symptomatic. On the other hand one of my Uncle's had a routine blood tests which revealed his TSH was over 10 so he was prescribed levo, yet he was not experiencing any symptoms and felt fine.
The ‘recommendation’ might be the same but the two conditions are not. One of the big issues is that GPs treat patients in the same way whether they are hashis or not. With Hashis, your thyroid is not just underperforming, it is being destroyed. If you have hashis, your condition is more difficult to stabilise as your damaged thyroid will sometimes dump thyroxine into your system and you will ultimately have no thyroid and need to keep increasing and changing doses as your ‘optimum’ - when you feel better - will change as your thyroid changes. You need to know as it is a death sentence for your thyroid - not a case of it being a bit lazy.
Your GP is an ignorant unhelpful tw*t who will have no real understanding of how to get you well. Like many, she hides her ignorance behind the NHS guidelines - which are guidelines - not mandatory as far as I’m aware. 🤸🏿♀️🥛
The term "lazy" - which is used not just for thyroid but also, for example, for an eye, is a moral and value judgement. Not a scientific description.
Should be totally banned.
When used, it seems to put the onus on the patient for them to get their thyroid, or whatever, up early and working hard. Regardless the impossibility.
Thanks! I wasn’t using the term as a serious medical description - I’m not a medic and it was describing the thyroid not the patient! I wouldn’t describe a person as ‘it’. Was trying to be humorous and failed I guess. Wrists well and truly slapped! I’ll avoid using it again. 🤸🏿♀️🥛
Very much NOT slapping your wrists. It is something that has been reported from medics - and you can readily find numerous examples of them using it. I just took your use of "lazy" as a quote (directly or indirectly) of the real world use of language by the medical establishment.
Yes, they speak of "lazy thyroid" (and would probably argue they did not mean the person in front of them - just the gland) but that carries the baggage of moral and value judgement.
Thank you for replying, I appreciate the information and support. I haven't done too much research into thyroid illnesses, as I was told I didn't have a thyroid problem. Or rather, that I am subclinical hypothyroid which according to my previous GP means that its a "wait and see" approach, and its "nothing to be concerned about". I am going to change GPs again, because this new one is obviously stuck in her ways and wasn't helpful at all.
I guess you are aware that this is a UK based forum and although we have members from around the world the majority of us are in the UK. So when giving test results it's essential to give the units of measurement for some of them and the reference ranges for all of them. This is because - taking Vit D as an example - because there are 2 units of measurement commonly used and the one used in the US (ng/ml) is very different from the one normally used in the UK (nmol/L) and unless the unit of measurement is stated you are going to get conflicting and confusing advice as some members will automatically assume it is the UK unit of measurement.
She also told me that there are new regulations around Vitamin D levels and the new normal for women is 20 and above.
I would ask your doctor where she got this information, get her to name her source, better still she should print it off for you.
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml).
So looking at your Vit D of 14 then I assume this is ng/ml. If that was nmol/L then that would be severely deficient. If you can please clarify the unit of measurement I will be happy to give you further information on how to work out how much Vit D supplement you should take and I will give links explaining the important cofactors needed when taking D3.
Also, please give more information about your B12 level, the range and the unit of measurement. Is it Total B12 or Active B12. Again, further information can be given when this is known.
In the UK we have private labs where we can order tests without having to go through a doctor. Is this possible in the US?
As the range is stated alongside your result, I would be inclined to push your doctor as to where she has got her information from that states that the new "normal for women" is >20. Also ask do men have a different "normal" (I very much doubt they do!). If the new range started at 20 then the lab would put this alongside the results, they wouldn't put the bottom limit as 30. I sometimes wonder if doctors think they are superior to their patients and credit their patients with no intelligence whatsoever.
So you are quite a way from the level recommended by the Vit D Council/Vit D Society - 40-60ng/ml.
To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 4,900iu D3 daily (nearest is 5,000iu)
To achieve this level… 50ng/ml ~ Take this much supplement per day… 4,900iu
Retest after 3 months.
I'm a big fan of Doctor's Best D3 Softgels, the contain only 2 ingredients - D3 and extra virgin olive oil. I raised my severely deficient Vit D level of 15nmol/L (6ng/nl) to 202nmol/L (80.8ng/ml) in less than 3 months then had reduce dose to bring it within the recommended level.
Alternatively, there are oral sprays which some people like. These possibly give best absorption for Hashi's patients as they're absorbed through the mucous membranes in the oral cavity and bypass the stomach, although some Hashi's patients have done well with the softgels.
When you've reached the recommended level (40-60ng/ml) then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range.
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
B12 - 336 pg/mL (range is 200-1100 pg/mL) it doesn’t say which type of B12 test is was, just says “B12”.
That is Total B12, if it was Active B12 it would say so and the reference range is much narrower, here in the UK it is 37.5-188.
Total B12 measures the total amount of B12 - bound to proteins and unbound (active). It's the active B12 that tells us what is available for the cells to use.
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."
Many people with a Total B12 in the 300s have been found to need B12 injections. You can check for signs of B12 deficiency here:
If you have any then list them to discuss with your doctor and ask to be tested for B12 deficiency/pernicious anaemia.
If you definitely don't have any then you could start supplementing with sublingual methylcobalamin, I would think one bottle of 1000mcg strength would be enough, also take a good B Complex alongside this to balance all the B vitamins. Once the bottle is finished the B Complex alone should be enough. Good B Complex supplements contain methylcobalamin and methylfolate, consider Thorne Basic B or Igennus Super B. Only self supplement B12/B Complex if you don't have any B12 deficiency signs or symptoms. If you do have symptoms then further testing needs to be done before any supplementing as this would mask symptoms and skew results.
Folate (serum) - 12.3 (range greater than 5.4)
This is fine.
Do you have a result for Ferritin? When there are other low levels or deficiencies, it's important to get Ferritin tested as well just in case there is a problem there as well.
The fact that you have these low levels might possibly be due to Hashi's so it is important to get antibodies tested. Your doctor is right in that "the recommendation is the same whether you have Hashimoto's or just hypothyroid" but what that means is that the treatment is the same - Levothyroxine - because Hashi's is the cause of the hypothyroidism. Hashi's can't be treated, the resulting hypothyroidism is treated. However, some people find that a strict gluten free diet and supplementing with selenium l-selenomethionine actually helps.
You can see that this over range. This is another reason why antibodies should be tested because an over range TSH coupled with positive antibodies should prompt an enlightened doctor to start Levothyroxine rather than wait until TSH reaches 10 (which is the cut off point in the UK, I didn't realise it was so high in the US).
If you had done a test at 9am, after an overnight fast from previous evening's meal/supper, and only had water to drink before the test, then your TSH would have been higher still. Have a look at the first graph in this post showing daily rhythms of thyroid hormones and you will see how TSH peaks at midnight but of course we can't get tested then, so next best time for the highest TSH is no later than 9am.
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