Please can anybody help me - After 3 recurrent miscarriages i was tested for thyroid problems and my results came back TSH - 6 and Free t4 - 11 so i was prescribed levothyroxine to try get my tsh below 2 for the next pregnancy but im unable to tolerate the levo. I have no idea why i feel worse on it if my blood test results show i need it and the gp has been no help. I feel so unwell with dizziness and brain fog and memory loss and fatigue and just generally unwell and have been for months now. My ESR is raised and i think my b12 test showed me to be at the low end of normal but still in range. I cry everyday as i feel so unwell and im not living at the moment and cant even consider trying again for a baby when im feeling this awful. I also tested positive for the autoimmune disorder APS which i will get treated for when pregnant next with heparin injections.
Please can anybody help me? I dont even know where to start or if i should try find the money to see a private consultant but should it be an endocrinologist or immunologist?
I cant go on feeling like this
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Milly79
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And you shouldn't have to, Milly. You have to know you have done nothing to deserve this. Your doctors are inadequate and unqualified but that doesn't mean you can't be well. Were you well before all this began. I didn't look at your history but a TSH of 6 is bad. Are you being treated for your APS. It seems that low platelets could be a problem. Not everyone does well with Levo but sometimes it is because your adrenal glands are so weak. Your doctor probably won't know how to treat that either. Plus for the levo to work you need good levels of ferritin. Some people are having private blood tests done through Medichecks or other labs and get the whole thyroid tested including antibodies of TPO or TGS which would really identify this as another autoimmune disease or not. Is that possible?
In the meantime I post this video by a functional doctor who explains how the thyroid works. Milly, start with your diet possibly avoiding gluten for a while to see if it makes a difference.
Thanks for replying - ive been tested for thyroid peroxidase antibodies and that was below 1 so fine. I went gluten free a few months ago to help my IBS and have read recently it helps thyroid too. My ferritin was 67 (15-200). Nope im not being treated for the APS - the obstetrician has said i will have the heparin injections during pregnancy along with baby aspirin but thats it. I did wonder about adrenal function. But gp wouldnt even discuss that.
Your Levo won't work when your ferritin is that low, Milly. Also you are probably deficient of D3 and this is critical. None of your hormones work without D3 and you should take it with K2. They have them together in one formula now since it is recommended. Getting all those levels up as well as B12 in the upper ranges, you may be to handle the Levo. If you are light headed and dizzy, this could be adrenal problems.
I almost hate to bring this up about your blood condition because not being a doctor I don't know if this would be proper but you could look into Serrapeptase or Nattokinase which are enzymes. They go into the bloodstream and dissolve excess fibrin (which makes up clots) and other bad proteins. When your body doesn't detox well, things collect in the bloodstream that should NOT be there. I don't think or know if that is the source of your condition. But they are safer than blood thinners for most people.
So my ferritin used to be 50 but its now at 67 because ive been taking ferrous fumerate iron tabs 210mg during my period because im so faint. When ferritin was at 50 my gp said it was fine because my haemoglobin was fine.
My vitamin d test was 78 - is this too low? Yes i thought my low b12 may be making me brain foggy and memory loss. Ive got supplements from holland and barrett but they dont seem to be helping.
How do i fix adrenal problems?
Im not having any gluten at all now and it helps my IBS lots. I dont have a lot of dairy just a drop of milk in my tea and the odd bit of cheese but my gp told me i need to up my dairy as she seems to think im iodine deficient and thats why my body isnt producing enough thyroxine. She said she heard it on radio 4!!
Would low vitamin levels make the levothyroxine have a hyper effect on me?
Thank you, Milly. It's hard to get ferritin higher because you need lots of stomach acid to metabolize and 67 is not bad. Keep it up. I would take 5,000 mcgs of B12 in a sublingual tablet, use methylcobalamin instead of plain cobalamin. You want it closer to top of 900.
You know there are other milks available like coconut, almond but not soy (isn't good for thyroid). Do you eat much soy in anything else. That is a blocker of thyroid.
Iodine can be a problem. Fluoride (in toothpase or tap water), chlorine in water (you can put a nice filter on your shower for not much money) and bromides used in fire retardant finishes on fabric all will take over iodine receptors. You could try a small amount of potassium iodide meaning a few drops. It's a little controversial since thyroid hormone is considered an iodine supplement as well. If you look at the links above I'm sure there is a page on iodine if you use the search line. Iodine deficiency CAN be a cause of hypothyroid but it's rare I think.
I'm not sure why you are having a problem with levo. It usually takes a while when most people realize it is doing more harm than good. Could you be allergic to the brands you tried?
I dont know anything about APS only after losing my last baby the miscarriage clinic tested me for it as sticky blood can be a reason for recurrent miscarriages. I didnt know it can affect your thyroid!
Since they can BOTH be autoimmune diseases, it often happens if you have one that you go on to deveop another. Your high Sed rate means you have a lot of inflammation. I wonder if your APS is causing that. I wish I knew if those enzymes I mentioned would be permissible with that condition. It's hard to know when it's not certain what is causing the APS. Your body would normally make systemic enzymes but things go wrong as we age.
Is the D3 range in the lab report from 100 to 200 or 50 to 100? Your 78 would be ok if it's the latter but not the former.
Sorry for late reply - i dont eat soy if i can avoid it but my doctor told me that almond milk doesnt have iodine like cows milk. Anyway i have booked in for a private iodine test as im sure its not that and to rule it out.
The lab report on the vitamin d test just said below 25 is deficient, 25-50 is insufficient and over 50 is adequate. So mine at 78 was fine.
Good, I hope you get to the bottom of things. You aren't doing the urine test for the iodine, are you? I haven't checked lately but I think there is something better.
I have to say over the past few years, it's been confusing as to the treatment of thyroid. You have to distinguish whether it's an autoimmune issue and usually it is. The video by Dr. Bergman at least explains what's going wrong but you have to figure out why. Dr. Clark has a series of videos 20 Reasons for Low Thyroid that goes into other factors. Maybe you have a deficiency and doctors rarely look at those. It takes a lot of investigation. You know you could try one of the natural desiccated thyroid hormones and see if your body prefers that. Your TSH is too high. If you didn't test the FT4 at the same time it is going to be harder to evaluate the T3. Stop the Thyroid Madness site has thoughts on T4 only and also an article describing the different hormones available for hypothyroidism.
Here is how a functiional doctor looks at autoimmune conditions even though we don't know if you have one. youtube.com/watch?v=P17zHdb...
I think you need a prescription to get it in the UK. Most members order two or three kinds from other countries. You will have to ask for private messages telling you how to do that. I'm in the U.S. I think Thyroid s from Thailand is one. Can you get a prescription. I used to order Erfa from Canada quite a long time ago but it was similar to Armour Thyroid. There is also Naturethroid.
I was thinking of going to see an endo privately to see why iam struggling with the levothyroxine and see about natural dessicated thyroid hormone but im worried i will spend a lot of money we dont have and still be told that levo is the only option. Nobody i have spoken to seems to have those side effects on such a tiny dose. But i cant think about being pregnant again until my levels are sorted. I have considered ordering online or asking my husband to buy when hes abroad for work but i dont have a clue about doses
I understand. This situation is awful for patients. This past year we've learned a lot about this condition and It has become more and more puzzling. You've been through a lot already. Your high ESR means a lot of inflammation which is basically what most disease begins with. While the body fights this is may borrow from Peter to pay Paul. I'm also worried that you may have the same problem with NDT. Your adrenals use much more magnesium and progesterone under these stresses. Did your OB say anything about those hormones? Your adrenals may need support before you support your thyroid.
One basic problem is that if you have any inflammation it will also involve the brain. Inflammation in the brain starts to affect other areas when you start losing mitochondria and neurotransmitters. Many of these naturopaths are stressing relaxation techniques which is something a doctor had constantly said to do religiously. It's getting the right and left brain in sync which I think puts you in a healing state. The more I learn, many keep going back to this idea and I think it has merit. Being in a fight or flight state constantly is disastrous. I've had Hashimoto's for twenty years but it could actually be Epstein-Barre that begins this process.
I realize this is getting very complicated but it is, and that's why it is so hard to get the proper help,
So just to update - i had the results of my free t3 done privately -
Free t3 is 4.5 (3.9-6.8)
Free t4 is 12 (11-26)
TSH 7.50 (0.35-4.50)
So my tsh has risen this month but my free t4 has also risen slightly too which is strange because i wasnt on levothyroxine.
So i have been trying the levothyroxine again the last few days at just half of a 25mcg tab (so a tiny dose) and so far i havent had the heart palpitations i had on 50mcg which is good if i could increase slowly BUT ive still had the other horrible side effects of extreme light headed, nausea, bloated and constipation and headaches.
I asked my doctor to try the liquid form but was refused as its too expensive for the nhs.
Ive tried mecury and almus and uni-pharma tablets so is there another brand with fewer fillers or are these side effects the actual levothyroxine and will go away eventually?
Actually your dizziness is one indicator but the saliva test for active cortisol is the current one. There is a kit and you collect saliva four times throughout the day and take the readings. You should begin with a high amount and should lower throughout the evening. If you drag out of bed in the morning and are wide awake at bedtime, that is also an indicator.
How about the rest of your hormones and you didn't say what your antibody tests looked like. Can you post those?
Yes, I would like you to watch the first video I posted by Dr. Bergman as he explains how the adrenal gland and thyroid plus other hormones work together or fall together.
And, yes, it is hard to use thyroid hormone when your adrenals have no energy source. High cortisol is draining and there are supplements you can try. Two ways to go with this is that you can use adaptogens like siberian ginseng and licorice root to stimulate the adrenals but if they are faltering it may be too much for them. In that case you can use something like Thorne's Adrenal Cortex supplement with DHEA.
Milly, as you can see it's probably not a good idea to take advice like this without knowing more about your test results. Your thyroid is trying to produce T4 but we don't know what is holding it back. Normally we think it is antibody attacks which can come about because of the virus or a gluten response. You could avoid gluten but it's hard to tell.
I watched the video and found it interesting. But i still dont know what to do.
Im ready to give up the levothyroxine again. I feel on the verge of a breakdown im so anxious and panicky on it.
My antibodies test came back negative so i dont have hashimoto's so not sure what is causing my thyroid problems. My throat actually hurts on taking levothyroxine.
Also my iodine test came back at 52 (40-80) so not deficient.
Did you say they would not do any hormone tests on you even after having miscarriages? That's abominable. Dr. Lam used to have a good website for female hormones so I'll find that. You've never had a cortisol test of any kind?
You have to decide what you what to explore since you don't seem to have any MD cooperation. You could get the adrenal cortex supplement to support your adrenal gland and try progesterone cream. Maybe they won't help but I don't think they will do any harm. drlam.com/articles/adrenal_...
Would the supplement cause me any harm if my adrenals were ok? - i cant afford another private test at the moment as the last ones came to almost £200.
Nope the gp said no to hormone testing. She said that all they would test for is to look for menopause but that doesnt apply to me. Is she lying??? What hormones can the gp surgery test for?
Your symptoms imply your adrenals are not ok but I doubt the supplements will do anything but support the gland. Look at the picture of the gland on Dr. Lam and take the 3 min. test. The more serious medication would be hydrocortisone and a doctor should monitor that. I think the DHEA will have a stronger impact and might be a bit more risky but maybe even rewarding. But they seem to do best together. Some take pregnenalone because it will selects which other hormones you need. I urge you look at Dr. Lam's site. Unfortunately conventional doctors won't go into the adrenal issues unless they are totally shut down.
Milly, are you at a pc where you can see the graph about adrenal fatigue especially at #7? This is where they try thyroid meds as well. If you are at this stage you need to do something for your adrenals.
Did you take thyroid hormone while you were pregnant.
Sorry I didn't answer your question. I was on Synthroid for six years and then finally found a doctor who would give me Armour. I had already had my children.
Some people have intravenous magnesium but those people have good doctors. I've taken magnesium for years and years, it's just very common for people to be deficient and you need it for proper absorption of calcium. Yes, good for adrenals.
Did they explain why you lost your babies?
I see Mary has advised you. Do you think you have a genetic component from the condition? People get sticky blood from other things than genetic and enzymes can thin the blood by getting rid of those causes but I don't know about the genetic cause if there is one.
How many different brands of Levothyroxine have you tried? There are 4 in the UK. Talk to your pharmacist and try alternative brands to see whether they are more tolerable. If not, your GP should consider prescribing liquid thyroxine. If your GP isn't helpful do see a different GP in the practice or even change practice.
The TSH of women planning pregnancy should be in the low-normal range 0.4 - 2.5 otherwise the risk of miscarriage increases.
Raised ESR indicates inflammation in the body. Your GP should do a full blood count to rule out infecton.
If B12 is low and you have the symptoms of deficiency in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice as they're the experts on B12 deficiency. If you don't have symptoms you can supplement methylcobalamin to raise B12.
My b12 was 350 (200-900). I discussed with gp and she said its within range so fine. I have bought supplements but they are cyanocobalamin. So i asked for a referral to an endocrinologist because the NICE guidelines state if the patient is hypothyroid or subclinical hypo then to refer if trying for a baby or pregnant. My gp has said it will probably get knocked back because my free t4 was within range at 11 (9-21). I said but my tsh is 6 and has risen from 5 since my last miscarriage but she said that prescribing levo to bring it down to under 2 in pregnancy is a new thing. I really dont see why it matters if its new or not as surely thats the whole point of new evidence in medicine. She has prescribed levothyroxine but just has been no help since i told her i cant tolerate it. Havent had t3 checked as the labs knocked it back. I have tried 2 brands of levo and both different brands at 50mcg and then 25mcg. I even cut a tablet to make 12.5mcg which is ridiculous as so little. Symptoms on levo are that of hyper ive read and should only be if i was taking too much. I had racing heartbeat, nausea, headaches and increased anxiety. I have made an appointment with my gp for 2 weeks time as a last ditch attempt and im going to take my mum - shes a retired nurse and good at speaking up!!
It's not a new thing to bring TSH <2.5 for women planning preconception, the BTA Statement is dated 2015 and the previous NICE Guidelines stated it too. Please show your GP the NICE, BTA and ATA documents I posted above. If your GP refers you now you may be seen because you are trying to conceive.
There are 4 brands of Levothyroxine in the UK. Talk to your pharmacist and ask for one of the brands you've not yet tried. If you can't tolerate any of the tablets then ask your GP to prescribe liquid thyroxine.
B12 350 probably is okay but it won't hurt to have it a little higher to help copy with the demands of pregnancy.
Ok thanks ill go to my appointment armed with those guidelines. Gp knows nothing about thyroid and told me im probably having side effects from the levo because im iodine deficient and need to increase my cheese and milk!!!! I asked for my iodine levels to be tested but she said no. I will ask about liquid levo - does it make a big difference in liquid form? My former colleagues in my old job at the doctors surgery have told me its now far too expensive so doesnt get prescribed much. I wondered if im not converting the t4 into t3. Going to get my free t3 and reverse t3 tested privately
If you can't tolerate tablets it's usually because of the excipients and fillers, liquid thyroxine won't have them. It is expensive though which is why, if it is prescribed at all, it will be as a last resort after you've tried all four of the UK tablets.
The blood test with rT3 is very expensive plus you will need a phlebotomist to draw blood for the test. If you want to know how well you are converting TSH, FT4 and FT3 done together will tell you that.
My hairdresser has APS and has been told to take aspirin during her pregnancy.
Yes ive to take aspirin and give myself heparin injections throughout the next pregnancy so hopefully that works as im not strong enough to cope with losing another baby. Just wanted my thyroid sorted too before i conceive. Especially if my tsh will go up more and my t4 down in pregnancy as the baby needs the thyroxine for the first trimester.
Is the b12 supplement i bought strong enough? 1000mcg of cyanocobalamin. I was thinking of getting b12 injections private because my brain fog and memory loss is so bad
Sorry for the late reply - so i gave my gp the NICE guidelines and she referred me to an endocrinologist but they knocked the referral back!!! Luckily the midwife in the recurrent miscarriage clinic that i attend noticed this and pulled a few strings with some colleagues in an antenatal clinic for thyroid problems ran by an endocrinologist and a gynacologist and i will get seen in May. Until then i am going to give the levothyroxine one more go but also having private blood tests tomorrow to check my free t3 so i can compare results if i manage to tolerate the levothyroxine.
You need to see a hematologist who has treated other APS patients. It is likely that you need to be on anti-coagulants all the time and not just during pregnancy.
You definitely need your thyroid treated. I take both synthroid and cytomel, and most people feel better with the combination. Synthroid only gives you T4, and assumes your body will make T3. But those of us with APS don't make T3 and we need to take it as Cytomel.
I didnt know that APS stops you converting t4 to t3!! Can you get the t3 prescribed in the uk? I used to work in a doctors surgery and it was only thyroxine that was prescribed. Do private endocrinologists prescribe it? I havent had my t3 tested as the labs knocked it back so i will need to get it tested privately
NDT isn't licensed for UK use and T3 isn't supported by the BTA because they don't have evidence that it's safe to use during pregnancy. They're not keen on T3 use in non-pregnant women either as "Levothyroxine is the preferred therapy".
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
So i had the thyroid peroxidase antibodies tested and they were below 1 so fine. Thats the only one gp would test. Tsh was 6.21 (0.35-5.00) and free t4 was 11 (9-21). The labs knocked back the free t3 test.
I managed to get my vitamins checked and told all fine -
Vitamin d 78
Folate 14.9 (3.1-20.0)
Ferritin 67 (15-200)
Vitamin B12 was 350 (200-900)
So i was started on levothyroxine 50mcgs and had heart palpitations and nausea, headaches and increased anxiety so switched to 25mcg but same side effects. I thought this only happened when you are taking too much but surely my blood results show i need it. Thought maybe im not converting it into t3
A good vitamin B complex (like Igennus Super B complex - contains folate) plus sublingual B12 lozenges (eg Jarrow B12 1000mcg)
Eating liver once a week will help improve ferritin
Selenium supplements can help improve conversion of FT4 to FT3. Choose one with vitamin E
Definitely get TSH, FT4 and FT3 tested together privately plus both TPO and TG antibodies
Often on offer from Medichecks or Blue Horizon
If after this both antibodies are low you might look at getting iodine test. SeasideSusie knows which test is best and may add a comment. But get thyroid tests first
To know your existing levels of iodine then go for the non-loading test. There is a loading test, where you take iodine before hand, but that apparently is a flawed test. In your situation if your GP thinks you are iodine deficient it makes sense to check your existing level.
You can get this done with Genova Diagnostics but it has to be with ThyroidUK as your "practioner" as they don't deal direct with the public. Here's information in how to order the test and obtain the results
And from downloading the PDF you will seen that the test you want is END25 -
Urine Iodine Test:
Specimen requirements: Urine
Cost: £71.00
Order Code: END25
Turnaround time: 5 - 10 days
**
By the way, Holland and Barrett own brand supplements are pretty naff, there are much better ones out there and best obtained online. If you want brand suggestions then just ask.
I haven't used that brand so it's not a personal recommendation. I use a different brand 1000mcg.
For a Vit D level of 78 I would suggest that the cheapest way to supplement is to buy some 5000iu softgels and take one alternate days. Retest twice a year to keep within the Vit D Council recommended range of 100-150nmol/L
It's recommended 200 mcg selenium l-selenomethionine (or a yeast-bound selenium is absorbed as well as that one), don't get selenite or selenate as it's inorganic and doesn't absorb as well.
Some people like to test selenium first, if you wish to do that Medichecks have just introduced a fingerprick selenium test.
Milly79, Don't think about trying for a baby until your thyroid is under control. Miscarriages are a symptom of being hypothyroid, and we often have members arrive on the forum having had many miscarriages
Hello, I run a forum for Sticky Blood-Hughes Syndrome Support, representing our new charity GHIC, which supports and educates regarding Hughes Syndrome/APS, otherwise known as Antiphospholipid Syndrome and Sticky Blood.
Often people with this condition, including myself have a Thyroid problem, and other family members past and present may have other autoimmune conditions including thyroid but also early heart attacks or strokes or a history of miscarriage.
Your GP needs to do these three tests, all of them
Anticardiolipin antibodies (aCL)
Lupus anticoagulant (LA)
Anti-beta2-glycoprotein-1 (anti-B2GP1)
On our forum we carry a list of the specialists across the UK who understand this condition, as well as administrating the forum over there, I am also a trustee of the new charity, come back to me if you need any further help.
The administrators on this forum know about Hughes Syndrome/APS and know I link up with them over such issues.
MaryF
If you have a history of migraines and any strange red lacy/blotchy rash, that is also indicative of this problem. I was given injections all the way through my 3 pregnancies and also Aspirin and due to this was able to carry three pregnancies.
Yes i have been tested in the recurrent miscarriage clinic and came back positive for sticky blood so in my next pregnancy i will be given the daily heparin injections and aspirin. Im also getting tested for nk killer cells in my uterus with a biopsy so may get steriods to reduce inflammation in the pregnancy too.
I just need to get my thyroid levels sorted first because i cant cope with another miscarriage
make sure they look at your Vit D, B12 and Iron levels, join my forum, as a lot of our members use TUK, and vice versa, on the right hand side of our forum under pinned posts is a list of specialists who understand the condition across the UK, useful for you, and useful for your GP. MaryF
Ok, it is called Livedo Reticularis. Glad you have had a diagnosis, as this will help you immensely, I look forward to keeping in touch with your progress. MaryF
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