I saw my GP yesterday for the annual flu shot, and also had my blood pressure checked. My BP is highish (190/98) and she says she suspect it's because I'm overmedicated. She wants me back on T4 and to be retested in eight weeks. If we cannot get my BP down naturally, she'll want me on drugs.
She also said that she disagrees with my original diagnosis, Hashimoto's. I was diagnosed in 2001 based on the following lab results:
TSH 18.41 (ref 0.4-4.2)
FT4 5.4 pmol/l (9-23)
anti-TPO 6154 UI/mL (<6)
anti-thyroglobuline 441 uI/mL (<4)
No FT3 tested.
In 2012, I was put on NDT after a 24 h urine analysis showed low T3 levels on 200 mcg of Euthyrox daily. I have been on NDT since, the past few years on Thyroid-S.
I currently take 4 grains of Thyroid-S daily. I normally take it as one single dose in the morning, but split the dose (2 grains x 2) for a couple of days before having labs in order to avoid a false low FT3 reading.
Results from 1 October:
TSH <0.01 (0.35-4.5)
FT4 0.8 ng/dL (0.7-1.5)
FT3 2.8 pg/mL (1.7-3.2)
anti-TPO 14 UI/mL 8<6)
anti-thyroglobuline 1 UI/mL (<4)
The GP says no doctor would diagnose me with Hasimoto's based on those labs, and that in her opinion, I may not even need to be on thyroid hormone replacement. She now wants me back on Euthyrox and, if my TSH fails to normalise in eight weeks, she wants me off it to see if I really need it.
My question is: should I fire this doctor?
I should add that my GP is not responsible for my thyroid treatment but she keeps asking for thyroid labs (she orders only TSH but I give her a copy of the labs ordered by my other doctor who always orders a full thyroid panel).
I should add that my GP is not responsible for my thyroid treatment but she keeps asking for thyroid labs (she orders only TSH but I give her a copy of the labs ordered by my other doctor who always orders a full thyroid panel).
If she's not responsible for your thyroid, why is she intefering?
She also said that she disagrees with my original diagnosis, Hashimoto's. I was diagnosed in 2001 based on the following lab results:
TSH 18.41 (ref 0.4-4.2)
FT4 5.4 pmol/l (9-23)
anti-TPO 6154 UI/mL (<6)
anti-thyroglobuline 441 uI/mL (<4)
I'd say she's pretty ignorant then. Those results scream Hashi's - over range TSH, below range FT4, massively over range TPO and Tg antibodies.
Results from 1 October:
TSH <0.01 (0.35-4.5)
FT4 0.8 ng/dL (0.7-1.5)
FT3 2.8 pg/mL (1.7-3.2)
anti-TPO 14 UI/mL 8<6)
anti-thyroglobuline 1 UI/mL (<4)
The GP says no doctor would diagnose me with Hasimoto's based on those labs, and that in her opinion, I may not even need to be on thyroid hormone replacement.
You wouldn't get a diagnosis of Hypothyroidism on those labs (you are receiving thyroid hormone replacement, which is obviously working as your TSH is low and your FT4/FT3 are in range). Your TPO antibodies are still over range but much lower than before and would suggest possible Hashi's if that was your first ever test. Antibodies fluctuate, that's the nature of Hashi's, they were tested at a time they were low.
She now wants me back on Euthyrox and, if my TSH fails to normalise in eight weeks, she wants me off it to see if I really need it.
Refuse. Why should you make yourself ill just so she can conduct an experiment. Is she in charge of your treatment - it doesn't sound like it from your post so if the answer is no then tell her to take a jump.
Whoever your other doctor is who is looking after your thyroid, trust that one. Tell him/her what your GP proposes.
And an important question - how do you feel on your current dose and with those results?
I feel very well at present. much better on NDT than I ever did on T4 only.
The problem is every doctor I ever see, for whatever reason, tries to interfere with my thyroid treatment since I am on a non-conventional treatment and my TSH is lower than they'd like. it seems many doctors are aware that thyroid disorders can cause all sorts of symptoms, but they don't understand HOW to best treat them....!
Besides, wouldn't hyperthyroidism tend to cause low BP rather than high, and high BP is more a symptom of hypothyroidism...?
If you feel good then there's no need to change anything, your October results look fine. Many doctors don't know how to interpret blood tests when NDT or T3 is taken.
I can't comment on BP, there are many reasons for high/low BP. My BP has recently become of concern and after monitoring I've now been put on a BP lowering medication. I can't link this to my thyroid because I keep an eye on my levels - I take Levo prescribed plus I self medicate with T3 which GP doesn't know about but I know where my levels need to be for me to be optimally medicated and my FT4/FT3 levels are well within range. My TSH is suppressed, but it has been for 25 years (maybe more, I've only kept a record for 25 of the 45 years I've been diagnosed/treated), and it was when I was on Levo only.
There is no consistency in what happens to blood pressure whether someone is hypo, hyper, under-medicated or over-medicated. BP can be high, normal, or low.
Doctors assume that high BP in a thyroid patient indicates they are over-medicated or hyperthyroid, and they associate low blood pressure with hypothyroidism. But they are wrong to make those associations.
Regarding whether or not you have Hashi's, as SeasideSusie said your results from your initial diagnosis absolutely scream that you have Hashi's. And once you have Hashi's it doesn't go away. But antibody levels do fluctuate. And the fact that your antibodies are a fraction of what they were back in 2001 is good news - but it doesn't show that you are cured of Hashi's and you could have high levels again next week, next month, next year or never. Nobody can forecast this.
Regarding whether or not you should fire the GP, I would say yes. Any doctor who could look at your 2001 results, say that you never had Hashi's and you don't have a thyroid problem and say that you should come off your thyroid hormones is an idiot and a sadist who simply can't be trusted with anything remotely connected to thyroid treatment.
There have been cases of doctors doing that (taking hypothyroid patients off all thyroid hormones) in the UK as an experiment to see if the patient is really hypothyroid and the patient has gone into myxedema coma, which is an extremely serious problem that has a high death rate. I've read that death rates are from 25% - 60%. I wonder how often the average GP or hospital doctor sees this condition and would readily be able to diagnose it.
Your nutrient levels could be affecting your blood pressure and optimising them may help. For example, if your iron and/or ferritin are too low this can raise blood pressure in some people. The nutrients which are suggested (on this forum) should be optimised are vitamin B12, folate, vitamin D, iron and ferritin (iron stores).
Thanks to all of you who responded, your replies are all very reassuring!
I think the main problem with most doctors is that a suppressed TSH makes them freak out. They also tend not to order other labs, but just assume TSH tells them all they need to know. It's like they expect you to drop dead from a suppressed TSH...!
I agree it would be stupid (to use an understatement) to go off thyroid meds. I will just drop this doctor and find someone else to monitor my BP.
I remember that, back when I was on T4 only, my TSH would fluctuate wildly. I especially remember how it ended up above range (around 5) on 125 mcg daily, then dropped to bottom of range (0.3) on 150 mcg, causing doctors to decide I should be on 137.5 mcg daily...which did nothing for me, and most if not all hypo symptoms remained. I feel more stable on NDT.
Yes, Fire the doctor. Your original results showed Hashis and it doesn't go away. Obviously, if you are on meds your results will look different, duh! (But your TPO antibodies are still positive) Free T4 and free T3 are in range. Have you tried beet juice or citrulline for your high BP? I would have high BP from the stress of seeing that doctor.
I suffer from when the coat syndrome too, then I took part in a pre-diabetes study that measured everything that could possible be measured.
They did BP by sitting me quietly in a chair, the nurse explained that she wouldn’t talk to me while my BP was being checked. Three readings were taken five minutes apart and at the end of it they were averaged and I had the lowest blood pressure I had ever had recorded.
After that I started taking my own BP the same way. My GP and I have an arrangement where I do my own BP at home and every now and again she asks me to drop my results into the surgery. So you could suggest that you do that too.
Also last time I went for a hospital check up I walked briskly to the hospital - a good half hour walk. I wasn’t expecting my BP to be taken - or to be weighed either!
I said before the nurse started that I wasn’t hopeful about the results , white coat syndrome etc - she didn’t talk to me which was good and the results were amazingly good so perhaps a brisk walk before you know you are going to have your BP measured.
You're right, I don't need another doctor trying to interfere with my thyroid treatment...!
As for the other tips, than you a lot, I will try that...anything is worth trying! I've actually read that it's better if nurses do that rather than doctors as that tends to drive your BP up....
I'm sick and tired of every doctor I come across trying to link my BP to my hyperthyroidism (to them, a suppressed TSH = hyperthyroidism no matter what) and trying to make me come off NDT and go back on T4 only until my TSH normalises...!
You definitely don’t need your doctor interfering with your thyroid treatment.
There was no way that my GP would have done that. It’s interesting what different doctors will do isn’t it.
Definitely worth trying t do your own at home and hand the results in. You can get hold of decent bp monitors for a reasonable price. If you get one get the kind with a cuff to put on your upper arm rather than the ones you put onto your wrist.
I was never any better with the nurse. Trouble is, I always knew they only had ten minutes so I felt rushed before I even started and I used to say to the GP that I didn’t want to talk while it was reading but I knew the GP was sitting there wanting to talk then get rid of me so it was never a relaxing experience.
I even got lousy results with the practice’s ‘do it yourself’ automatic BP machine. It was parked in a corridor, I always had to adjust the height from the person before me and I could never get comfortable, then there were endless people going back and forth. Totally useless.
I was very hyper and my doctors knew I had raised BP but no one ever said my BP was raised because of that - a link between the two was never ever mentioned.
My doctors surgery has a system of you taking a blood pressure monitor home with you, you record the results over five days and then return the monitor with the results to the surgery for checking. I always suffer from white coat syndrome, but this system works well for me.
I think it would be a good idea to measure my BP at home to know what it looks like when I'm not in a doctor's office as that alone is stressful to me...I avoid doctors as much as possible. They usually dislike NDT and try to get you off it. They seem to think they have a right to interfere with thyroid treatment and tell people to go off drugs prescribed by another doctor (I have been prescribed Erfa but chose Thyroid-S to keep costs down). The official version is always that I'm on Erfa as I am sure any doctor would freak out if I mentioned Thai NDT bought online...
Thanks to everyone for giving me good advice and sharing your own experiences!
I am on NDT and of course my TSH always has them freaking out. I happily tell them "oh good, that is a good result. It is a block and replace of course"
They do not know enough to contradict me and it shuts them up. :0
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