Help, please. Levo lowered and BP rising again. - Thyroid UK

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Help, please. Levo lowered and BP rising again.

Cinnamon
Cinnamon
14 Replies

I went to the GP a week and a half ago. Levo at 50ug. Was feeling ok, but a bit tired. A week away from my B12 injection. TSH was 0.01 and T4 20. She wasn't happy. Too low. I said what about shifting to 25ug one day, 50ug the next (ie alternating), as the endo had said I might need to do this if 50 turned out to be a bit too much. She said yes. I had my B12 injection this past Friday. Took my BP yesterday (BP had been hovering 138/79) and it was 170/86. This morning, It was 145/90. Can feel my heart pumping again. GP is away for another week. I'm worried. I don't want to see anyone else in the surgery. Thoughts, please.

14 Replies
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shaws
shawsAdministrator

My TSH was the same as yours at my last blood test. The lab said 'adequate medication'.

When doctors adjust your medication due only to your TSH result - you said you were feeling o.k. too - there may be consequences for the patient. You now appear not to have enough levothyroxine for your body's needs. Doctor's do not understand about metabolism.

You say you don't want to see another doctor and that she is away for one week. You have only two options that I can see, increase to 50mcg and see her on return or see another GP.

If you cursor to the question dated June 8, 2001 it will give an explanation of how a low dose of T4 affects metabolism and thus reducing the TSH.

web.archive.org/web/2010112...

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Cinnamon
Cinnamon
in reply to shaws

I will print out the post from 2001 and bring it with me next visit to GP. I didn't think to ask GP if lab had said 0.01 was within normal. I have no hyper symptoms. Will monitor BP over next couple of days. If things don't calm down, I'll go back to 50ug and bring a hard copy of BP levels along to surgery.

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shaws
shawsAdministrator
in reply to Cinnamon

If your blood pressure was down with 50mcg and up with 25mcg. I think your GP will think it wise to keep at 50mcg for a short while. You should have another blood test done in about 6 weeks to make sure your meds are working. Never mind the GP saying 'normal' always get a print-out. The normal for a person who is health and no thyroid gland problems I believe their TSH is 1.

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shaws
shawsAdministrator
in reply to shaws

Most GP's I think will take no notice of Dr Lowe's 2001 re metabolism, unfortunately. Be ever hopeful as your GP might.

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tegz

Are you taking BP meds? Variations can occur day to day- but the diastolic at 90 is high if it stays there. All these BP figures depend on your age and general health also -if you're fit your heart can take a few excursions.

Something else could be making you more tired as well.

It's not commonly done in NHS but could you try to get a T3 reading next blood test?

With figures like yours it's worth checking to see if T3 is above the range half way mark- as this is optimal from all the advice I've seen on here and makes the low TSH acceptable.

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Cinnamon
Cinnamon
in reply to tegz

No, I'm not on BP meds. The GP tried a couple which had no impact at all. It was only once my levo was raised to 50ug, from 25, that my BP started coming down. My T3 is ok. Just took my BP again and it was down to 136/82. I've started the menopause, so the hormones running around might be affecting things as well.

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Glynisrose

NEVER let your GP lower your meds, they will never raise them if you need it in the future. Blood tests are not accurate and do not tell you what is being absorbed and what is circulating uselessly in your blood stream!! If you feel hyper, then reduce your meds yourself and if you are feeling hypo then take a little more but do it yourself, do not let someone else control your illness, that is your job!!

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Cinnamon
Cinnamon
in reply to Glynisrose

Well, that's definitive :-) I've actually gone back on the 50ug dose I was taking and I'm already feeling a bit better and the BP is slightly lower. The GP will be hysterical that the BP was rising -- she's more concerned about that than anything else. So, I am hopeful she'll actually learn something about the thyroid etc from this episode. Worst outlook, I'll tell her to refer me back to the endo if she's unhappy.

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tegz

I don't know whether it's the |HypoT- but my BPseems to be down relative to years back on, a now, lower dose of BP meds.

Mine shot up on first dose of Levo so I stopped right away and waited a week and started at 1/2 dose. That seemed to work and I upped to 25 thereafter. Everyone here, pretty well, says make slow changes to thyroid meds [if possible].

Hormones are wrapped up with everything else so no surprise they can cause surprises.

My experience of GPs on the BP front is that they are much more inclined to enlist patient co-operation [than in the case of thryroid problems] as compliance is notoriously bad for BP meds. and the outcome well known for not treating.

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Cinnamon
Cinnamon
in reply to tegz

I hope you're right regarding 'patient cooperation'. No BP med I've been prescribed has had any effect at all on my BP. The only thing that has brought it down is going from 25 to 50ug of levo which brought it into the 'normal' range for the first time in over a decade. I am hoping a reminder of that is a cogent enough argument to keep my GP from arguing about staying on the higher level of meds.

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tegz
tegz
in reply to Cinnamon

Well, that's my experience- no guarantee that it will repeated elsewhere!

In my case, BP meds seemed to cause stress to my system- at one time I was on 3x max dose of an ACE inhibitor to no great effect. Another med, Doxasozin put me in hospital with nose bleeds and the dose was doubled on returning home amazing ,ain't it!

I'm now on ACEInhibitor ,1/2 doseCalcium Ch. Blocker and 1/2 dose Diuretic -and have good control.

Ian's post below suggests BP surges may be a generic response to any med -as, after a time, the body gets to realise that chemicals coming in aren't helping and cortisol kicks in autiomatically, much like white coat syndrome does. This can even be additive to WCS.

The fact that Levo may actually be on the right course for better health doesn't register- the T4 build long time constant is another matter entirely.

I've seen no research on the effect of multiple meds on sensitive people -and untreated UAT certainly increased these problems, for me.

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vajra

I'm no expert C and this isn't medical advice, but it seems likely that for blood pressure to shoot up in a short time requires the effect of something that acts relatively short term. i.e. that possibly makes unlikely the longer term degenerative kidney and cardio-vascular conditions that can be causes.

Relatively longer term hypothyroidism seemingly causes this, but may be a slower process?

In my own case my BP tends to run high and to be unstable, but not as a result of thyroid issues. The release of excess adrenal hormone (especially cortisol) is pretty clearly my cause. As determined by adrenal stress testing (the Thyroid UK/Genova test), and by the fact that it responds primarily to beta blocking BP meds that block the effects of some of the adrenal hormones.

This sets out the picture in a bit of detail in the hope that others that might benefit or may be prompted to check out the territory - it seems likely that this scenario underlies/is the origin of many of the thyroid, fatigue and other health issues reported here. Pardon the length, and pardon me if it becomes clear that this is not your situation.

I've linked some resources at the bottom that helped me, but there's lots more out there on the topic of chronically high cortisol levels.

I suffer from exaggerated stress responses - maybe post traumatic, or possible foetal or genetic in origin as my life situation these days is not high stress. It may be a programmed relic of a very high pressure job years ago too. It's seemingly possible at times to reverse the programming that causes it, although I've not yet reached a conclusion on whether the method works - see the links below.

There are also conditions unrelated to stress that can cause a high output of stress hormones, but relatively rarely it seems.

Stressful situations and foods or anything else that my gut is sensitised to/that triggers immune responses drive my BP through the roof too. This could conceivably include medications we don't get on with, although it doesn't seem to happen in my case.

We hear a lot about adrenal exhaustion here, and that's where the above ends up if not treated and/or reduced by lifestyle and dietary changes and other methods like meditation, EFT (emotional freedom technique), and body mindfulness work. (see Jon Kabat Zinn's 'Full Catastrophe Living'.

The earlier stages of chronic stress though (before the adrenals become exhausted) tend to see chronically raised cortisol and stress hormone levels - with probably high DHEA levels too.

This is often the road to chronic fatigue and/or hypothyroidism - when cortisol levels are abnormally high gut function is partially shut down leading to poor absorbtion of nutrients and key vits and minerals. Eventually to leaky gut and realted immune dusturbances.

Auto immune thyroid disease caused by immune attack (Hashimotos), or at least primary hypothyroidism as a result of these deficiencies can quickly follow. Which if not quickly diagnosed and treated can (as happened to me) cascade on into irrecoverable thyroid damage, secondary illnesses, loss of homeostasis and other potentially hard to treat conditions.

One discovery i've recently tumbled to (my thryoid replacement is these days well dialled in) is that chronically high cortisol produces symptoms that can feel very like hypothyroidism. Certainly low energy, easy tiredness, bloaty and sometimes nauseous gut, tendency to put on weight around the middle, joint pains and so on.

This became abundantly clear upon trying a supplement (see the links again) which partially blocks the action of ACTH (the hormone that triggers the release of cortisol) - it's so far left me feeling like a new person. It's not yet clear see links and above) whether or not it's going to pull off the re-programming of my stress responses that it's said to do in many.

You mention experiencing palpitations - which while not inevitably the case could very likely to be caused by high cortisol levels too.

We're not necessarily all that aware of worrying about stuff at times, and there's also it seems the fact that the stress response if the situation is ongoing often gets stuck 'pedal to the metal'. i.e. we don't return to normality - basically because a different part of the brain has concluded that the situation is permanent and taken over.

It's pretty clear at this stage that in my own case the very high stress levels caused by a high pressure work environment led my becoming chronically stressed, and on to hypothyroidism, chronic fatigue, thyroid auto immune and various other diseases (including a thyroid cancer) - and eventually the loss of my thyroid, and to my system ending up 'stuck' in high stress mode. This progression from chronic stress to thyroid problems seems to be a pretty typical with chronic fatigue.

I was endlessly tested by GPs, endos and consultant physicians over the 15 or so years all this took, but they failed to pick up high (but presumably not immediately life threatening) cortisol levels, auto immune disease and hypothyroidism. It seems like many of the stock blood tests (not just the thyroid variety) are either unreliable and/or detect only extreme cases.

I've posted these links before, but this is a very informative description of condition that is chronic stress, and of one person's experience of a similar path to that I've recently followed: medicinegarden.com/2011/02/...

It's important to note that if the problem is chronic stress that any resolution starts with lifestyle changes - that we can't expect to just pop the pills and continue on as before.

The approach it seems has been used by some US naturopathic doctors for years to treat chronic stress/chronic fatigue. This manual sets out in very readable form the approach developed by a Dr. Poesnecker (recently decesaed) at this clinic since the 70s in quite a bit of detail: clymer-healing.myshopify.co...

Note the title 'Mastering Your Life' - his way of emphasising that it's not just a matter of popping the pills....

ian

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Cinnamon
Cinnamon
in reply to vajra

I have a family history of hypothyroidism and Reynaud's syndrome, so circulatory issues.

I believe I was borderline hypo for over a decade (ie, sitting around a TSH of 4.5-5) before my TSH went over 6, my periods stopped, I started gaining weight, and had some other overt symptoms. GP, who doesn't appear to know much about thyroid (what a surprise), started me on 25ug of levo. My TSH fell into range. She was happy with that, but my BP (I've found quite a bit of med research linking borderline hypo with cardiac problems -- no history of elevated BP in family) stayed stubbornly high. She prescribed one, then another, antihypertensive. The first, an ACE, did nothing. The second, a calcium channel blocker, made me sick, and did nothing.

I finally convinced her to up my levo to 50ug and she sent me off to an endo. Low and behold, after a month on 50ug, which coincided with the endo visit, my BP had fallen into the normal range. Endo sent a letter telling GP she was happy with my BP and said I had very intelligently asked for B12 and adrenal insufficiency tests. The latter came back fine; the former very low.

Post starting the B12 injection course, my BP fell further. I am convinced this is all about a long time of not having enough circulating thyroid hormone with a knock-on effect in particular to my heart. It appears that 50 ug of levo does enough to keep me healthy. But, it also drops my tested TSH and raises my T4 to the point where ignorant GPs get antsy.

I have put myself back on 50ug of levo as of yesterday. I guess we'll see if this proves my belief, ie, my BP comes back into line after a week or two.

If it does I will have to remind the GP I have no hyper symptoms and could we please just test me every six weeks if that makes them happy and I will monitor my BP at home. We'll see where that gets me. And, I think in future I should follow Glynisrose's advice.

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vajra
vajra
in reply to Cinnamon

Hi C. Sounds like you're not deferring to authority, and that you are heavily enaged which is great.

The relationship between TSH, thyroid function and high cortisol/chronic stress is pretty complex, so my personal thought would be not to still not rule out the possibility of an adrenal dimension.

Here's links to some info that's about:

ncbi.nlm.nih.gov/pubmed/231...

womentowomen.com/adrenalhea...

stopthethyroidmadness.com/ps/

stopthethyroidmadness.com/a...

stopthethyroidmadness.com/r...

High cortisol it seems tends initially to result in raised TSH levels, but it can also inhibit TSH output. It also messes with T4 to T3 conversion, and stimulates the production of increased levels of reverse T3. (in order to damp the fires when cortisol levels are high)

It seems that it's pretty hard to predict exactly what's going to happen. Especially when the patient has reached the stage where adrenal exhaustion is commencing. This because when in that state we can oscillate quite rapidly between high and low cortisol levels - which can cause all sorts of confusing symptoms.

Maybe somebody has a mechanism as to why improved thyroid replacement can rapidly drop BP? I'd be dead interested to hear too.

I don't mean to sound over zealous on the topic, but I spent years tweaking my thyroid replacement to try to eliminate persistent blood pressure and fatigue issues and couldn't make it work.

Then a recent adrenal stress test showed up chronically high cortisol levels, probably the result of a messed up HPTA (hypothalmic pituitary thyroid adrenal) control axis.

There's still a way to go to getting full control of the BP, but the treatment linked above has helped enormously...

ian

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