just had a nurse out and she took my BP and it is very high - 172/116. i've been medicating my adrenals for almost 2 years and increased my dose about a year ago of adrenavive. i'm currently taking 300mg and 5 mgs prednisone.
i'm waiting on test results for my adrenals but for all this time i've just been shooting in the dark once dr p stopped practicing. as hashi's hypo and adrenals share so many symptoms i've carried on treating both.
my bp was a bit high ever since dr p diagnosed me, but he said nothing to worry about too much. i've had it taken early in the year and it was still a bit high.
this morning was scary - and i've had a few slight dizzy spells the last week. this is more scary as i'm hobbling around on a broken ankle and have a broken wrist. i thought the stress of this and struggling to cope might have been the cause, but the nurse said not to this extent.
pulse and oxygenation were fine.
basal temp has also increased the last couple of weeks - it was as low as 35.1 a few weeks back. today was 36.3.
i recently added dhea and 5-htp to my adrenal support. i have cut my salt intake in my water a bit, but if my adrenals have improved then perhaps i need even less - my last bloods i posted on here showed sodium was a little high, which is why i dropped the salt a bit.
pretty worried now, as was given a gp appointment without so much as a query from reception.
thanks everyone.
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According to your labs 1 month ago, you were under-medicated. Has your dose changed since then?
High blood pressure is a symptom, not a disease. And, given that you are hypo, it wouldn't be unreasonable to assume that being hypo is the cause of your high blood pressure. It's very rare that salt is the cause. They'll probably want to put you on BP medication, but it probably won't work if the cause of your high BP is low thyroid hormones. What you need is to improve the levels of your Frees.
thanks. it was the nurse that said over-stimulated adrenals can raise bp, so i thought i'd ask.
which labs do you mean? thyroid? not had adrenal results yet - any day now hopefully.
yes, just been reading that bp meds can cause more probs with thyroid! last thing i need.
also, i've been off all thyroid support for nearly 5 weeks for various tests. just started back on them. 2 days of metavive, then ndt arrived and changed to 1/4 grain wp thyroid.
also, fact that since breaking my wrist and ankle last friday i've been really struggling - that can't have helped my stress levels much.
I was talking about your thyroid labs. So, if you've been off thyroid hormone for such a long time, then you will be even more under-medicated. That could most definitely raise your blood pressure.
What did she mean by 'over-stimulated adrenals'? What would be stimulating them? I would be very surprised if she actually knew anything about it.
this ties in with a convo i was having on another thread. for some time my shoulders are always up around my ears - even when in bed! it gives me head and neck ache if i don't force them down. i couldn't understand this, as my psychological stress is a lot less than it has been. physically, my sleep was poor, but i've been improving that a lot and sleeping well the last week.
everyone on that thread with this problem were hypo. turns out it was thyroid anxiety. this would be related to the bp, i'm guessing.
what do you think to continuing metavive until i can build up the ndt dose or get levo?
I'm not sure that Adrenavive and prednisone stimulate adrenals. That wouldn't be advisable at all. The support the adrenals, not the same thing at all.
I often raise my shoulders without realising it. It's usually when I'm having difficulty walking, due to various aches and pains. But, I'm rarely anxious.
So, are you suggesting that you continue Metavive and slowly reduce it as you increase your NDT? That would work, I think. But, do you want to go back to levo?
just got my DUTCH test back and need to analyse it. at first glance i seem to high circulating cortisol but lowish cortisol output. there are 16 pages, so it may take a while.
i'm inclined to think this is all down to hashi's with a bit of extra stress due to trying to cope with my accident. i think i trust the opinion on here over an nhs nurse.
yes, that's what i was thinking with the metavive and ndt...
but... i was also advised on here that ndt may aggravate my hashi's, and that t4 may be a better option. i've never had levo before.
on the levo v ndt situation, i am really confused.
I'm afraid I know nothing about the Dutch test, so wouldn't be able to help you there, anyway.
NDT can aggravate Hashi's, but doesn't always. If you've never been on levo then you can't know if it would suit you or not. But, it's something to try if you find you really can't tolerate NDT.
ok. so i'll follow previous advice and increase ndt weekly 1/4 grain at a time. then i'll look out for contraindications and stop if i get them. i'll try and get levo to have to hand if ndt doesn't work out for me.
If I were you, I'd increase every too weeks. I don't know who told you to increase weekly, but it's rather reckless advice. Otherwise, the plan is good.
well, gp just called me. i suppose you can guess what she wanted to medicate me with for my bp.
i explained the situation and that research and consensus on here relating to bp and hypo - she was a bit passive aggressive and asked if thyroiduk were going to contact her to recommend levo, as she couldn't do it off her own back.
long and short of it, a nurse is coming in to see me due to the broken arm and ankle every other day. she will monitor my blood pressure. gp was a bit snitty about my medichecks test results, but she is going to arrange for an nhs blood test for antibodies - in a proper lab, lol.
my ultrasound showed a small node on my thyroid, so they want to redo it in 6 weeks. don't know what that means - but voice has been very hoarse the last few weeks.
we argued about me self-medicating, and i reminded her the nhs has done absolutely nada since i first presented with symptoms over 5 years ago. the only thing they did was offer me levo 2 years ago which i refused - thank god, as my adrenals were shot - and saw dr p instead.
we also argued about my tsh being in range to which i said the nhs ranges are incorrect. that didn't go down too well, either. we agreed to disagree, and i continue to prepare for a battle with the endo - although if i do well on ndt i wont care if i see her or not. her main interest is diabetes, anyway, as a friend works with her and they do diabetes courses together.
sigh... why does everything have to be such a fight with the nhs... said just about everyone on this site since it first began.
Oh dear, what a shame. She was obviously offended. When did she last test your TSH, fT4 and FT3? If she hasn't done that recently, she has no idea what she's talking about.
I have high cortisol - or I have done in the past, I'm way overdue for a re-test.
I take Holy Basil to lower my cortisol at night. If I stop the Holy Basil for a few days I can feel myself getting more stressed and anxious and my insomnia worsens, presumably because of my rising cortisol. I also end up with my blood pressure getting higher and higher.
If you are treating yourself to raise cortisol is there a possibility that you have overdone it?
Note that 5-HTP raises cortisol. I don't know what DHEA supplements do to levels of cortisol.
You might want to increase your intake of potassium-rich foods to see if it lowers your BP.
just got my DUTCH test back and need to analyse it. at first glance i seem to high circulating cortisol but lowish cortisol output. there are 16 pages, so it may take a while.
i think the nurse put that into my head. everywhere else on this site the blame for unexplained high bp is under-medicated hypo.
I'm not able to advise on adrenals really, but if you ordered the DUTCH test through Regenerus, they can refer you to someone who can interpret the results, if necessary. I think humanbean is right, and it's important to know what's currently going on to know how best to support adrenals. Mine were ok until adaptogenic herbs lowered them. Recent testing shows I've successfully raised them mostly with liposomal vitamin C and stress management. Speaking of which, my heart goes out to you having broken both a wrist and an ankle. Poor you. That must be very challenging and won't be helping with your stress levels and overall health. I hope you live with someone supportive or can get extra help. Be kind to yourself and good luck with your recovery.
Well, adaptogens could be helpful under the right circumstances. For example, this is a study that shows ashwagandha lowering cortisol and helping with stress and anxiety.
The trouble is that we're often told they work like a 'thermostat' and will normalise both high and low levels. People can also get into trouble when these supplements are taken for an extended period without testing their effect. (she says from personal experience ;))
otoh, vitamin C is believed to help support adrenals and to help with bone healing, so that might be something to consider.
thanks. dr p was happy with me taking ashwagandha. i was also taking cordiceps, but stopped as i was taking so much stuff.
i take loads of vitamin c. i've also just started takin betain+pepsin, so i should start digesting more nutrients. my diet is extremely good, but that's no good if i'm not digesting it properly. trying to address all that.
That Holy Basil is amazing! I sleep like the dead. I recommended it to 2 other people who are now trying it and like it. It tastes ok, too - I thought it would be foul, but it tastes more or less like green tea to me.
I was nervous of how hard it knocked me out, so was reluctant to try it during the day to relieve stress. Tried it yesterday - just under 1/4 tsp - and it did the job, and I still had energy.
That said, I'm vert sloppy with supplements and now realise I was taking far too much before bed. After about 20 minutes after I drank the tea I could barely stagger to bed.
Holy Basil is also called Tulsi - and under that name it appears in lots of different kinds of tea and in teabags. I find it quite palatable. I wouldn't take it if I was low on cortisol though.
I'm not sure what you're using the salt in the water for, but with the BP that high and dizziness, you might consider really cutting down the salt intake. My mom's not hypo, but we titrate her dietary salt intake and its effectively lowered her advancing BP and keeps her in the normal range.
i did reduce my salt intake a few weeks back. i went too low and felt ill, so put it back up - although about 3/4-1/2 tsp lower than before. i put it up a little when it's very hot.
my bp is a little better today, which is probably the thyroid meds getting into my system.
Hi I am an Addison's patient and not sure what adrenavive - I am assuming it is an 'over the counter' so to speak Adrenal stimulant like liquorice for low blood pressure. All the things you are going are perhaps over stimulating your adrenal glands - the blood pressure function actually comes from the kidneys and the adrenals - so over stimulate and your BP will be high. They need support but be careful or you are producing adrenaline instead. I am on DHEA but that is because I am so low there was none at all in the body - I tried taking Pregnenalone which is another adrenal hormone that can be bought over the counter and had to sto9p because my6 blood pressure went to over 200. Can I ask why you are on 5mg of steroid - was it prescribed. This is an adequate amount for the adrenals if you have not had a SST to establish you are suffering with a pituitary issue or the adrenal glands themselves malfunctioning. My way of looking at things when something like this happens - whether with skin issues or BP gone high - what have I touched - eaten - or done to cause this.
the nhs has done absolutely zero for my adrenals. my gp said it wasn't addisons, so no further action taken.
dr p did the classic tests - achilles reflex, balance, bp sitting then standing, basal temp - and he actually read all my symptoms; about 30 of them. he was in no doubt.
i did my own tests for my adrenals and got the results yesterday. i have to study them, as they're very complex. but i do have low adrenal output - that much i could understand.
Please be really careful- taking steroids if there is any chance you don’t need them, could be incredibly dangerous for your long term health.
I am not a doctor (but I do have Addison’s) and it sounds like you are following the treatment path for someone with Addison’s (steroids, salt etc) but these steps are all designed to keep our BP from being too low and help our bodies as we don’t make cortisol and can’t retain salt.
If your sodium is high, your BP is high and you are losing weight, that strongly suggests that you don’t need the salt or the steroids and that you have too much cortisol in your body.
Can you remember what your cortisol reading was from the GP? If you can, it could be really helpful to share.
I am not remotely disapproving, just genuinely worried for your health.
If you are taking steroids without having true adrenal insufficiency, then you will be suppressing your adrenals, which will over time stop working completely.
Being steroid dependent is life threatening and not fun at all.
Do you wear a medical ID and carry a steroid card? As a steroid dependent patient do you follow all the sick day rules and rules for if you ever need surgery, have dental work etc?
The simplest way to find out if you have adrenal insufficiency is to get a 8-9am cortisol blood test from your GP- that will tell you everything you need to know.
Here’s a link to the GP guide to diagnosing Addison’s, which has all the 9am values on it and what they should do next.
Like I said before, I would hate for this to come across as disapproving, genuinely I just want to help and make sure you’re only taking something if you really need it and understand the long term risks of doing so.
in may, my 9am nhs cortisol readings were: 372 nmol/L range 150 - 600 - but that's with taking 5mg prednisone.
actually, looking at my sodium levels for december 2018 (after a 24hr urine test), my levels are: 141 range 133 - 146, and i was on more salt than now.
without prednisone for 2 weeks, my regenerus test states: patient shows significant higher free cortisol than metabolized cortisol. advises me to check thyroid hormones. cortisol is in the low range on waking, then shoots up mid-morning... presumably after taking prednisone. after that, both cortisol and cortisone are within range, then above range at night.
not sure what you think of that.
i just wanted to give my adrenals enough support to cope with the intro of ndt.
just checked addison's page. i do have the drop in bp on standing, and i was craving salt and sweet thing ages ago. i changed the way i ingested salt - lightly salted water sipped throughout the day rather than 2 glasses of water with 1/2 tsp salt 3-4 times a day. i was up peeing all bloody night! small amounts throughout the day sorted that issue.
worth mentioning that before dr p brought up the salt issue i was having too little - esp in summer.
i ditched carbs and the cravings and tiredness went.
That reading of just under 400 at 9am is pretty good, granted it’s not at the 450ish that’s ideal for that time of day, but it’s not much below. Had you taken prednisone that morning before the test?
It sounds like you could do with something to support your adrenals whilst getting your thyroid meds right but steroids really is an extreme option.
The whole time you are taking them, you are suppressing your adrenals and pituitary, which can result in the adrenals atrophying over time, which would be awful for you.
I really strongly suggest that you go back to your GP and get another 9am cortisol and also ask for them to check your aldosterone, as that’s what regulates your sodium and if your body is struggling with sodium retention, it will be easy to see in a low / below range aldosterone. If it’s not low, then taking in extra salt could do a lot more harm than good. As an Addisons patient, I don’t retain salt and even with putting salt on absolutely everything, it’s very difficult to get my BP above 100/60.
Does Dr P still prescribe your prednisone?
5mg is a full replacement dose- that’s what Addisons patients take once their adrenals have no output, so it could easily be taking you above range.
Are you having any monitoring done? A simple day curve would tell you whether you need the steroids or not.
Do you wear a medical ID bracelet and have a steroid card? I would be really concerned if you don’t any the steroids you’re taking aren’t on your medical record, as if you fall ill or are in an accident it’s essential medical staff know you’re on steroids, especially if your adrenals have become suppressed by the prednisone.
trust me, i know a lot about prednisone, as i have crohn's. i've been on 170 mg before in hospital. due to this, dr p had to really convince me that a physiological dose of something i need is not the same thing as the damaging effects of high dose steroids. there are also a number of books i've read that back this up. addisons patients are often prescribed 7.5-10 mgs. i will wean myself off anyway once i get my thyroid sorted. that has been my plan for some time, but it's taken ages to arrange these tests.
as for aldosterone, that's why i wanted a full hormone test, as i tried to get a mineral corticoid but was refused until i can see an endo - been 7 months and still waiting. the test results are to try and persuade the endo to give me what i need. that said, they didn't test for aldosterone. guess i'm going to have wait for the endo, as the tests have cost me a fortune.
i get prednisone off my gp
w
2 weeks off prednisone and everything else and i felt rough.
If you’ve been on high dose steroids before then you could already heading for secondary adrenal insufficiency - in this case your aldosterone would be fine, as it’s only primary adrenal insufficiency (ie Addisons) whereby aldosterone is low and you need extra sodium.
The full adult replacement dose for Addisons is 20mg hydrocortisone a day, which is 5mg pred - very few take more than that, unless double dosing due to illness.
It sounds like you know what you’re doing but please don’t stay on it any longer than you need to- you’re suppressing your adrenal glands as they don’t need to produce anything whilst you’re taking 5mg pred a day and the danger is that they’ll stop working altogether and being steroid dependent is life threatening and really not much fun.
Very interesting post. I have been thinking about the same things lately, having managed to wean off a psychological dose of prednisolone (5 mg daily) for adrenal fatigue after two years on it...not easy, but glad I did it as I was getting increasingly uncomfortable about taking it long-term. What you say makes sense to me. However, the doctors prescribing prednisolone for adrenal fatigue claim that physiological doses will support, rather than suppress, the adrenal glands. I never trusted that 100% so decided to wean off it. I am determined not to go back on it as I am wary of long-term side effects.
Thanks for posting this info with the perspective of an AI patient!
I have to admit I never gave it much thought when I was put on pred; all my doctor said was I could raise it to 7.5 or 10 mg daily in case of an acute infection but to "make sure not to take more than 10 mg daily as that would be a supra-physiological dose"...yes, I'm glad I managed to wean off it. The more I read about the long-term side effects of steroid use, the more I felt determined to get off it for good.
Hi, I just thought I'd throw in a bit of my experience...
I was medicated with anti hypertensive drugs for 29 years. After being diagnosed with hypo by a holistic MD in the States when I was over there visiting my mother (I live in UK), I was put on NDT and within 6 weeks, on 1 grain, I bent over in the kitchen and then felt very dizzy....pressure was 90/60 (low, esp for me!) I am a retired nurse, and decided to stop the blood pressure med. BP stayed in the 120 / 80ish range ever since!!! Haven't been back to the GP since, as I am not looking forward to THAT conversation....Makes me so angry that I was on drugs for it all of those years, and NDT has lowered it better than anything else along with sorting out other symptoms. Just my two penneth worth;)! X
thank you so much. confirms everything others have said about thyroid and bp on this amazing site.
this also gives me hope i'm doing the right thing.
today a nurse came round and took my bp again - i've by now had 4 x 1/4 grains and a few metavive - 3 before my ndt arrived, so today is one week of a small dose of thyroid support/meds, so the stuff must be getting into my system. my bp was slightly better today. it was 180/90. i'm heading in the right direction. yeh!
just an update as to my high bp issue... had it taken today after 3 days back on metavive and 1 week on 1/4 grain ndt (10 days in total of some kind of thyroid support) and... wait for it... it was 130/80 today.
i guess i didn't need the statins after all. i wonder what my gp will say to that. she was adamant it had nothing to do with my thyroid.
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BP meds ok with Thyroid S?
