I'm new here. Was diagnosed with autoimmune hypothyroidism in Jan 19 and have been building up Metavive since then. From Dec 19 I took too much for 2-3 months as I didn't understand the importance of checking my pulse rate, and I now have symptoms of hyperthyroidism. These have improved a little but I have a thyroid blood test at 4.30 this afternoon. Should I take my usual Metavive this morning? Should I ring the surgery and see if they will agree antibody tests, too? What would be the ideal tests to have?
I'm really struggling with the lockdown as I'm now in my 19th month of being housebound. I'm getting really stressed, depressed, anxious, and confused about the thyroid problem. I was originally diagnosed by Dr Sarah Myhill through a private blood test, but my surgery won't take any notice of the results, so they have never seen the set of results with TSH at 7.5. (though I understand they were unlikely to have treated it at that level - am I right?) The first NHS blood test in May 19 showed TSH of 0.75, so they have nothing to show I needed treatment for hypothyroidism. Now they want to treat me for hyperthyroidism with NHS medication, assuming today's blood test indicates the need. This seems mad when I've reduced my Metavive to a better level, so my resting pulse is 85. My BP is rather high atm, I'm very stressed in general, plus I was really upset by the GP I spoke to on the phone last week. She didn't want to get involved with the thyroid treatment, but she does want me to have a blood test, as my mood is so low, and sleep poor - typing this at 3am - and the symptoms could be due to hyperthyroidism. BUT I'm not keen to go to the hospital for the tests, and she asked me what makes me think I have problems with my immune system. I didn't know what to say to that, when I have ME/CFS, and I felt really undermined, making me even more stressed. I have read, I think, that the thyroid plays a part in the immune system, as well as there being plenty of research into ME and the immune system.
Have other people found this all very confusing? How can I tread a successful path between the GP and Dr Myhill?
Also I am sometimes very thirsty and have a disgusting taste at the back of my mouth (they seem to go tog.) Can this be a thyroid symptom?
One thing that seemed to work yesterday to bring my BP down was some yoga, including yoga nidra. My BP was a healthy 120/75 at the end, so I think I need to just do it, instead of waiting till I feel less stressed!
Any comments much appreciated.
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artypants
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Hi and Welcome ! I think you have been diagnosed with Hashimotos - which is auto-immune. Can you post the results you have from Dr Myhill ? TSH - FT4 - FT3 and Anti-TPO.
I doubt your GP will test T3 - which if over range could indicate you are over medicated. Are you able to have Private testing done in your home through Thyroid UK - Special Offers on Thursdays !
Testing anti-bodies again is not really needed. I would ask for B12 - Folate - Ferritin - VitD - all need to be optimal for your thyroid hormones to work well and for you to feel stronger. Many of your symptoms could be low nutrients as well as low T3.
How much Metavive are you taking ? Other medications ? Supplements ?
On a phone you can scroll down and down to find TOPICS and Hashimotos is one where you can read more. Also lots of information in the link above ...
Hi Marz, I really appreciated your early morning reply,and sorry i haven't replied before now. I wanted to give your suggestions some thought, as they are quite broad, covering nutrition, supplements, etc, as well as test results. Yes, I can see Hashimoto's is auto-immune, but I wondered if there could be others under the same grouping. Dr Myhill calls it primary hypothyroidism, though she says it may be auto immune. I need a bit more time to check on the things you suggested. Then I'll post if I can. Thanks again.
How can I tread a successful path between the GP and Dr Myhill?
In my experience you can't, but of course all doctors are different. When I saw private doctors for my thyroid when I couldn't get anywhere with my GP (I had been diagnosed and treated for many years but it all went pear shaped and my GP hadn't got a clue), my GP did the referrals for me but refused to have anything to do with my thyroid, no testing, no discussion.
I was originally diagnosed by Dr Sarah Myhill through a private blood test,
Are you on her books as a patient? I know she's no longer taking new patients on but if you've consulted with her in the recent past can you consult her again?
I have a thyroid blood test at 4.30 this afternoon. Should I take my usual Metavive this morning?
Last dose should be 8-12 hours before blood draw to give the normal amount of circulating hormone. Any longer and you get false lows for FT4 and FT3, and any nearer and you get false highs for FT4 and FT3.
Now they want to treat me for hyperthyroidism with NHS medication, assuming today's blood test indicates the need.
Well, you're obviously not hyperthyroid or you wouldn't have had a diagnosis of hypothyroidism originally. It's very likely you're either overmedicated with your Metavive or you have Hashi's and if your thyroid hormone leels are high (FT4 and FT3) then you just need to reduce your Metavive temporarily.
Why are you seeing your GP about this if you've been diagnosed by Dr M and are self treating?
You can do private blood tests with home fingerprick tests from Medichecks or Blue Horizon and as Marz has said I'd get the nutrients tested as well, these all need to be optimal. The most recommended test here is the full thyroid/vitamin panel:
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test:
Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
**
TIPS FOR DOING FINGERPRICK TEST
* Be well hydrated, drink plenty of water the day before, and before you do the test.
* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.
* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.
* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.
* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.
* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable
I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did
* Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.
If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it.
**
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
I'm confused - Does Hashimoto's mean auto immune hypothyroidism?
"Well, you're obviously not hyperthyroid or you wouldn't have had a diagnosis of hypothyroidism originally. It's very likely you're either overmedicated with your Metavive or you have Hashi's and if your thyroid hormone leels are high (FT4 and FT3) then you just need to reduce your Metavive temporarily."
I am one of Dr M's patients; I'd misunderstood her directions and overdosed for 3 months on Metavive, but have reduced under her guidance and now have good pulse rate of 85 that she wanted. One GP has been willing to do blood tests and the overdose showed up, so they offered medication for it (!) and I said I'd wait and see what a further blood test showed, hoping it would have improved in a month. BUT I have been so depressed, extremely irritable, actually suicidal at times, and my sleep has deteriorated, so I can get as little as an hour and a half's sleep, so last week I rang the surgery - different doctor - who said these could all be due to hyperthyroidism. She didn't want to get involved with my thyroid treatment, she said, and she doesn't acknowledge treatment with anything but NHS meds, plus they have no blood tests showing high TSH in the first place as it was done privately. Both GP's advised further testing,( and I thought it wouldn't be a bad idea to see what the latest picture is.) Dr Myhill has looked at the hyper blood test results and said adjust the dose and "hang on in there". She doesn't seem to get involved in mental health. Also, my state of mind could be due to being housebound for 18 months, and nothing to do with my thyroid anyway. Can you get depression with being hyperthyroid, as well as hypo? Plus I am really thirsty with disgusting taste in my mouth; I read that goes with being hypo. I do know it can't be diabetes as my blood sugar levels were excellent on last test. Can you get symptoms of both at the same time?
Thanks for your tips about doing blood tests. I have very bad brain fog, so I get overwhelmed with information very easily, but the test tips are quite easy to follow. But it sounds as though it will be ok to go ahead with the blood test this afternoon, as my TSH is very low. In March, Serum FT3 was 14.8 (3.1 - 6.8 reference range); Dr M commented that is high, but I'm hoping the test will show it has improved.
Yes, autoimmune thyroid disease is the most common cause of hypothyroidism. Hashi's will be confirmed by raised antibodies. Were these ever tested and Hashi's confirmed?
Can you get depression with being hyperthyroid, as well as hypo?
You are not hyperthyroid. Hyperthyroid is overactive thyroid. You have an underactive thyroid, it can't suddenly become overactive but you can be overmedicated which is apparently what you are (or were).
Can you get symptoms of both at the same time?
Yes, with Hashi's you can get hyper-type symptoms and hypo symptoms.
Hashi's is where the immune system attacks the thyroid and gradually destroys it. When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted at these times if necessary, but will need readjusting when hypo symptoms return. This is not hyperthyroidism.
Unless a GP knows about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.
PS please could you explain what you mean: "It's very likely you're either overmedicated with your Metavive or you have Hashi's and if your thyroid hormone leels are high (FT4 and FT3) then you just need to reduce your Metavive temporarily." In the light of my test result for Serum FT4 that I posted below.
I think I've probably explained that in my reply above.
If you have Hashi's (and I don't know, you will need a positive antibody test to know that) then your suppressed TSH and high FT4/FT3 will be caused by a Hashi's hyper swing.
If you don't have Hashi's then those results would be caused by taking too much Metavive.
I have hashimotos, I do not respond to thyroid meds, I go from hypo to hyper, from hyper to hypo, since hashimotos attacks the thyroid gland, since I don't do well with meds, I follow a hashimotos diet, find a Dr that helps the immune system, get a good B vitamins supplement, find a good accupuncturist, and a good naturepath, the levothyroxine is poison for me, I would get nonstop palpitations and shortness of breath, diarrhea, nausea, n the list goes on, Drs want to shove the thyroid meds down my throat regardless of the horrible symptoms I get.
That sounds very tough to cope with, 6957. I'm finding it's best to find my own help, too, for various health problems. It's empowering, but also really overwhelming to find the way, when you're poorly in the first place. That's when medical professionals should be helping not hindering!
Yes, artypants, that's right, Drs need to understand that patients are different, react differently to meds, but all Drs I've seen only want to go by the book and one pill for all the patients, they don't want to deal with the symptoms, the allergic horrible reactions I get, they think it's all in my head, it has been about a month since I've finally got off the levothyroxine, and I feel so much better, today I worked on my front n back yard, I had not done that at all cuz I was so sick all the time. All I'm saying is listen to your body when something is not right, when a med is making you feel worse not better, it time you take action, find a Dr that listens to you, personally I haven't found one, that's why I'm taking another approach, I make alot of research, on hashimotos, and there are Drs out there that listen, n they say not all patients with hashimotos respond well to meds, and they give a great explanation why, they have other approaches.
Hi there, thanks for your reply - sounds like you've had to trust yourself and your body, to get to a better place. It helps to know in advance that things may not go smoothly with doctors and my thyroid. I know that with GP's, but I haven't had to use consultants much. You really need to be proactive and take your own decisions with your health these days. I think there's probably a lot of tosh coming from mainstream health 'experts', and that's where it helps to speak to people who've already found answers for themselves. I hope you're enjoying the bank holiday weekend!
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