I could really do with some advice as to how to get my doctor to take my symptoms seriously. Apologies for the long post.
For years I have gone back and forth to this doctor with the same symptoms - basically all hypo symptoms - and every single time he has taken bloods and told me everything is "fine". To begin with I thanked him and appreciated his diligence in taking bloods and was relieved to know that I am medically "fine". This has left me berating myself for obviously being lazy, a hypochondriac, depressed and along with my doctor blamed everything on my Narcolepsy, Fibro and IBS. For years I have literally been telling myself to "get over it".
It's only been the last couple of years as I began to lose faith in him that I researched my symptoms and realised I likely had an underactive thyroid. But even though I went back to Doc, he just blamed everything on the usual illnesses I have and my weight, despite me telling him I had been to SW for 1 year and lost a total of 5lbs (3 of those in the first week). I was running 10ks at the time as well (well I say running, it was more a dawdle) but still he insisted food and exercise was also the problem.
So I did private blood tests which came back as an underactive thyroid - TSH @5.75, B12 deficient and Vit D deficient. I finally go to the doc with proof but he was not happy and refused to look at the results and told me it was impossible to be Vit D deficient as we store it for years. But he took bloods to appease me and he claims it all came back "fine".
So I sourced NDT and started that, started B12, D3 & K2, selenium, a probiotic and magnesium. My next private blood test showed my levels were slightly improved but still a million miles away from optimum. I have been on 2 grains of NDT for 1 year and still feel like poop. I've now sourced Levothyroxine and bought that to try instead.
Basically I'm struggling. I do not want to have to keep doing this without a specialists help - I'm basically experimenting with my health. I'm paying for private tests that I'm then having to interpret online and getting more and more depressed by the day. I just want my doctor to listen and at least try something.
What can I do to make him listen? What rights do I have? Has anyone gone through this and managed to make an ignorant doctor take note of symptoms?
Please can someone help? Thank you
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Linac
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I'm so sorry you've been going through this, but it's not uncommon to hear stories like this.
Can you post your results so we can offer some help?
Have you got full thyroid and vitamin/minerals tests?
Post what you have, with reference ranges, and we can go from there.
It doesn't sound as though you will get anywhere with your current GP, maybe it's time to see a different one. And even if you get a referral to an endocrinologist, they can refuse to see patients if their results are within range. But let's not jump the gun, let's see your results first.
I cannot change GP. We have a catchment area here and I only have access to this surgery which has one doctor only.
My latest results are as follows but they are improvements on my first private test. I know I should be happy that things are going in the right direction but it's hard to stay optimistic when I literally haven't a clue what I'm aiming for.
To me, who knows nothing, I look at those levels and think I should be fine? I know the Ferritin and CRP are high and if they are the same on the next test I will see the doctor but I think they're down to a fibro flare up
Just to confuse things lol. My first private test results were as follows (used a different company, not as comprehensive)
I know the Ferritin and CRP are high and if they are the same on the next test I will see the doctor but I think they're down to a fibro flare up
Yes, they are very high, so do keep an eye on them and follow up if they stay high next time.
TSH 3.59 0.27 - 4.20 mIU/L
T4 Total 96.4 66 - 181 nmol/L
Free T4 12.20 12.0 - 22.0 pmol/L
Free T3 3.52 3.1 - 6.8 pmol/L
I take it these results are on 2 grains NDT. They show you are very undermedicated.
The FT4 is low because you're taking NDT, the T3 in it tends to lower FT4, but it usually lowers TSH as well. Also your FT3 is very low, just 11% through range. When optimally dosed on NDT one would expect to see that in the upper part of the range. So you could increase your NDT.
I don't take NDT but from what I have read, you should increase by 1/4 of a grain at a time and wait a few weeks to see how you feel, increasing by 1/4 grain again if necessary. I would think waiting 6 weeks - due to the T4 in NDT to be fully absorbed - would be about right. 1/4 of a grain increments is best so that you don't go over your "sweet spot" - if you do then you'd drop back to the previous dose, but at the moment I'd say you have a fair way to go.
It may be best to try increasing NDT at this stage rather than changing to Levo. You could always do that further down the line if you still don't do well on NDT with an increased dose. You're aiming to get TSH down to the lower end of it's range and FT3 to the upper end of it's range.
Anti-Thyroidperoxidase abs 9.7 <34 kIU/L
Anti-Thyroglobulin Abs <10 <115 kU/L
These don't indicate autoimmune thyroid disease (Hashimoto's). Have you had them tested at other times, and have they ever been high or over the limits?
Vitamin D (25 OH) 75nmol/L
What dose of D3 are you taking? What form of D3 ae you taking - softgel? Oral spray?
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L
so you probably need to be taking about 5000iu daily at the moment. I'd do that for 3 months then retest.
I see you are taking K2 and magnesium so that's good.
Vitamin B12 260pmol (equivalent to 352pg/ml)
I see you are taking B12. In what form? Is it sublingual methylcobalamin lozenges? What dose?
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."
If you don't have any signs of B12 deficiency then you have a fair way to go to increase your B12 to a decent level.
Folate 22.30 - 8.83 - 60.8 nmol/L
This isn't too bad on the whole but is on the low side, it should be at least half way through range (35 with that range). Are you taking a B Complex? You should be if taking B12 as it keeps all the B vitamins in balance, and a good one like Thorne Basic B or Igennus Super B contain 400mcg methylfolate at the recommended dose and that will raise your folate level.
As for your previous results:
Vit D - 38.52nmol/L
You've done well to raise this so much.
TSH 5.7mIU/L
This was obviously over range and your GP could have diagnosed sublinical hypothyroidism which is where the TSH is between 4-10 and with symptoms. Some doctors may start Levo, many wait until TSH reaches 10.
FT4 10.12pmol/L
It's not possible to comment as there is no range but I expect it is either low in range or below range. If it was below range then your GP should have investigated because a low FT4 with a normal, low or slightly elevated TSH can indicate Central Hypothyroidism which is where the problem lies with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
If you have the reference ranges for these results, please post them so we can look at this further.
OMG Thank you for such an in depth response. You've actually made more sense and offered more information than my GP ever has or could. As crappy as I feel I kind of feel a little better just by you confirming that it's not in my head and that I'm not just making a mountain out of a molehill.
TBH I stopped the NDT a few days ago when I purchased the Levo which I haven't started yet as it hasn't arrived. Without seeing much improvement in my symptoms I kind of had a hissy fit, felt sorry for myself and decided the whole thing was pointless. This kind of low is why I wanted a Doctor to fall back on.
I am going to take your advice and continue with the NDT instead of messing about with the Levo.
Vitamin D3:- with regards to this, originally after the first test I started on a high 10,000 daily dose which is why i suspect I increased it so quick, although just before the second test I had spent 2 weeks in the sun so assume this may have increased the result?
I did use Doctors Best softgel in an oil carrier but I now use Thermodrone D3 & K2 capsules. The D3 is 3000iu and the K2 is 100 via MK7.
B12:- I've been taking sublingual tablets by Nu U Nutrition @ 1000mcg daily . I do have a fair few of those B12 symptoms but to be honest my doc would just say they are down to either Narcolepsy, Fibro, Asthma or IBS.
I am not taking a B Complex as such although I do take Berrocca daily and I notice this has many of the B vitamins found in B Complex.
This really is a lot to wrap a head around isn't it lol. All those numbers and figures just go over my head which makes it all the more frustrating. I just felt as though Iit was a never ending story, that there was no light at the end of the tunnel and the thought of feeling like this until the end of my days is just unbearable.
Thank you again for listening and taking the time to explain everything
As SeasideSusie has said, it’s not uncommon for GP to dismiss everything Thyroid related.
I have to say my experience was that my private Endocrinologist was rubbish, but my GP stepped in with my
Levothyroxine treatment as by this time my TSH reached 12.2.
If your from the U.K. then normally the NHS will not step in until your TSH reaches 10 or above then they will start you on Levothyroxine.
Unfortunately, Levothyroxine didn’t work for me, and neither has T3 alone.
I’ve stopped all my thyroid medication at the moment and I feel dreadful.
You may think I’ve been stupid stopping T3 but for the last three weeks and two visits to A&E I’ve had terrible neck stiffness and headaches. The headaches are not as intense since stopping T3, but I noticed a connection when I took T3 it made it worse.
I’ve tested my cortisol levels and adrenal levels and they are not right, hence why I’m struggling.
My endo advised me to request a painkiller from my GP if T3 caused headaches. Luckily no such problem but how about you, would you be happy to control the headaches if it meant you could then also continue with the T3?
Linac, unfortunately this is the situation many of us are in I had my thyroid removed due to cancer, and was told I'd be taken care of, but I now have to self medicate. The situation with thyroid treatment is absolutely dire and people are often left to suffer.
In the end I felt confident to self medicate with the support of this amazing forum. I read it for about a year before I decided to take the plunge. It's essential to understand your own blood tests and what the goals are.
It sounds like with NDT you made the huge step of starting it, which I think is the hardest bit, but never managed to get the dose tuned to what is right for you.
Tuning the dose is absolutely essential with trying out NDT or any thyroid replacement, because it will only work for us when we've got the right amount of hormone in our bloodstream. In terms of blood tests, the goal is to get the freeT3 into the top third of the range. Although blood tests are just a guide, and the true goal is to get relief from symptoms and hopefully back to feeling ourselves and being active again.
If you want to try NDT again, I suggest you try SeasideSusie's suggestion. Start with a low dose and increase by a quarter every few weeks. I'm not quite familiar with this protocol, but you keep doing that until you feel well or until you get to a point, sonetying like 2.5 grain, and then hold for 6 weeks and get a blood test.
If you want to try Levo instead, start on a low dose liked 50mcg, wait 6 weeks on that dose, get a blood test. And then adjust your dose based on what the blood test says. Unfortunately there is a lot of being patient required!
It sounds like you are doing really well with vitamins, carry on with that until they're looking optimal. It's really a scandal that people in your position are being let down so badly
I didn't give up when my GP was unhelpful. I wrote a carefully worded letter. If memory serves (!) it was mostly pleasant and appreciative but also about being kept ill through not being taken seriously and not given the medication I needed. My next letter was going to mention seeking compensation for this but I didn't have to do that. It's hard work when you are already tired and feels unfair but it is worth the effort.
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I hope you get some help with medication.
UnderactI've thyroid advice
Endo had finally had finally decided to try me on low dose t4
Just back from an awful experience at the doctors
new to all this
Underactive thyroid crirical
