Exhausted and in tears: I am currently on 75mcg t... - Thyroid UK

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Exhausted and in tears

Oobie_ profile image
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I am currently on 75mcg t4, no supplements. Also on birth control called logynon. On the sugar days I use an oestrogen patch as I cannot tolerate the hormonal fluctuations and migraines - I think I get deficient in oestrogen. I used to be on t4 + t3 and I was ok for a while dropping the t3 but now I have found myself incredibly cold, exhausted, and I hate to admit it but I think I'm depressed. I've seen the doctor but not gotten labs back. I think he forgot to measure ferritin. Has anyone eventually gotten depressed dropping t3? Also, this is my 4th bcp as I did not react well to the first 3 I've tried. I would self medicate again but I need the patches as my periods bring about terrifying migraines. I am not sure what to do at this point. I cannot stop crying and am just so tired. I am a mother of a toddler and I just cannot go on like this. I cannot even enjoy music. My cognitive function has gone downhill. I am emotionally brittle. I'm at a loss as to what to do now. I feel so alone and exhausted. Any input would be appreciated.

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puncturedbicycle profile image
puncturedbicycle

Poor you, how awful, I'm so sorry. Your tone is so familiar, I have felt like that myself, a lot of us have.

Yes, it does sound like the t3 was helping. A lot of people feel brighter in mood and cognition on t3. I certainly do. It is sometimes used to treat depression in euthyroid individuals.

May I ask, were you self-treating w t3 and did you drop the t3 and not compensate w additional levo? Was there a reason for stopping t3? It may be as simple as being undermedicated, which feels awful but is fixable.

I wonder if your migraine is a symptom of being hypo. Is it possible you've never been adequately treated for your hypothyroidism?

Do you have any test results you can post? I know you don't have the most recent, but what about before? And have you ever had vit b12, d and folate tested? Even if gp forgot to test for iron, have you been low in iron before?

Certainly some bcp have side effects like depression but as you need them let's focus on the thyroid issues and you can address the other stuff later.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

Thank you for replying. The only way I could get t3 was to see this DO who insisted that I need to keep a tsh of 1 on it, or self medicate on ndt I've managed to get my hands on. This doctor dumped me because I couldn't take such low t3 and keep a tsh of 1 on it - I needed more than 20 mcg a day. Off I went to a different one who dumped me too because I couldn't drop the t3 entirely with the addition of t4. Basically I had to stop it because most of the doctors I've managed to see are t4 only doctors. I am doing my best to make this work for me. No results as yet and I'm going on Tuesday to get it. I have suffered from vitamin d deficiency and iron before (low iron and ferritin). I've been telling them to check my t3 but they say it's not important. My migraines got worse after I stopped breastfeeding. My left ovary has shrunk too. I am so tired of being treated like I'm some crack addict because i want to take t3. I just need to find where i can get some oestrogen patches and I'm thinking of self medicating again. I will come back next week, hopefully with labs. The doctor refused to give me valium but ordered TFT and LFT. I was ok for a while dropping the t3 with bcp and patches but things seem to have gone downhill from here.

puncturedbicycle profile image
puncturedbicycle in reply to Oobie_

If you just stopped t3 without replacing w adequate levo you're likely to be undermedicated now and that may be why you feel so unwell and are struggling w migraine.

You may need to think about self-treating (Incl ordering your own blood tests) or finding a good practitioner who will treat you.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

I am so there. I just need to find sources of oestrogen. The bcp should be easy enough. I think after this I don't want to deal with doctors/endos for a while. I just need to get patches then I'm self medicating myself.

Thanks for your support. I really needed to hear this and not the "what did the doctor say" and "listen to your doctor".

puncturedbicycle profile image
puncturedbicycle in reply to Oobie_

Generally people go to the doctor hoping they will help, so they're prepared to listen and do what they're told, and if there is a plan and the doctor knows what they're doing that seems sensible. Sadly there are too many people here whose doctors don't have a plan and don't think there is anything wrong. So I guess listening to the doctor is often a good idea, but not indefinitely and not if you're not getting anywhere.

May I ask where the oestrogen idea comes from? Is that something that you know about or does it help? Only because I'd be reluctant to regard that as a long-term solution without strong evidence that it is what is required. Generally as we age we end up with more oestrogen than other sex hormones, so the balance is lost and that can cause problems.

Migraine is a recognised hypo symptom, and being adequately medicated might help. Have you ever been referred to a specialist? Idk if a gp is the ideal choice to treat chronic migraine.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

Even on t4 + t3 I've had horrid migraines. I charted it and it is worse from after ovulation time up to until a few days after period. I've asked to be tested and it was lowest among everything. A scan showed my left ovary has shrunk too.

I don't mean to whinge but it has been one thing after another after I gave birth. I had two infections, I thought my c section incision would totally open up, I ran out of milk, thyroid still uncontrolled... I. Am. So. Tired. I've just really been doing my best and putting on a brave face but now the tears won't stop.

puncturedbicycle profile image
puncturedbicycle in reply to Oobie_

I'm so sorry, that sounds awful. You'll get through it but for now it must feel impossible. I'm not a parent but I'm sure there are a lot of people here who are familiar with just this sort of desperate situation when you're unwell and there are small people to care for. It will get better as you plug away at it, but it will take some time, and how you feel now is making it all look even worse. I will never forget that desperate hypo feeling where everything is emotionally and cognitively overwhelming. That part should get better on enough of the right sort of meds.

What I mean about migraine being a hypo symptom - and I apologise for repeating myself but this has been a wide-ranging discussion so I feel it may be useful to do so - is that even on t3+t4 you can be undermedicated. I haven't seen your lab results so I'm just throwing that idea out there. If you know that your tsh was low (1 or under) and your t3 and t4 were in the upper quarter of the range then that is what being well-replaced looks like, or that is the gold standard when you've struggled to be well on thyroid hormone. That is what you should aim for to see if there is significant improvement.

Is there anyone you could ask for help so you could get a few hours of rest and look after yourself?

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

You might have a point. I could try dropping the sex hormones and just raise the thyroid hormones too once I've said bye bye to my care plan here.

I've had to go on one to get a discount to see the psychologist and 5 free physio sessions because my back has got issues as well. My muscles just decided to tighten and not let go, it was squeezing my spine.

puncturedbicycle profile image
puncturedbicycle in reply to Oobie_

Well I'd ensure you're on enough thyroid hormone before I'd give up any migraine safety net as the headaches sound crippling. If you can get there w thyroid then you can address migraine. I wouldn't just let go of one and cross my fingers for the other.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

I just need to close off this care plan deal and find a way to get own hormones and hopefully not get any more migraines as that is what is making me dependent on doctors. They always check my tsh and say it's too low but afaik it should be low on anadequate amount of t3 anyway. It's the menstrual migraine that has gotten me in this situation. It's so awful. Triptans only work 2 hours. I need a shot to knock me out.

I don't know if I will ever be migraine free or feel better at this point. I do have this headache everyday, and I still get migraines but at least now they are controllable with massive amounts of antihistamines.

Tbh being on t4 makes it worse. Idk why. I've posted on many places asking about this. What is it about t4 that makes menstrual migraines worse?

But because I tried to play ball i tried the bcp + oestrogen patch route and it did kinda help but here I am now and I hate myself.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

My husband and his family try to give me as much rest as I can but it's not enough when it's even an effort get dressed :/

Chippysue profile image
Chippysue

Hormones are very intricate to balance and it's not for me to advise but if I can just say that I would not be taking birth control and certainly. It oestrogen.

Oestrogen dominance is a possible cause. Where do you get the patches from??

If you can get your hormones in balance including your thyroid I am sure that you will be good.

Sue

Oobie_ profile image
Oobie_ in reply to Chippysue

This is why I'm playing ball about this t4 only palava. I get the patches from the endo. I wanted bhrt but they said i was too young and as I was desperate I took the bcp route. I tried talking the bcp continuously but that didn't work out for me. Need the sex hormones. If not for that I would be self medicating.

Kitten1978 profile image
Kitten1978

Oobie,

Many of us need T3 medication, either as pure T3 or in T3/T4 combo (synthetic or ndt) to feel well. Taking the birth control containing estrogen is likely to increase your need for thyroid hormones. I'm sorry I don't remember the exact reason why it happens but it is common that TSH goes up if we take bc containign estrogen. It doesn't mean that you shouldn't take bc, you may simply have to increase your dose of thyroid medication.

Take care

Kitten

Howard39 profile image
Howard39

Hi sorry you have been unwell.

I feel like you have been abandoned to cope alone. Having thyroid deficiencies are bad enough but mixed in with sheer ignorance from your doctors and hormone / migraine problems no wonder you feel like crying!

The other members offer good advice.

I will try to help in anyway I can and address them to the best of my ability. (My specialist area is a little different )

Vitamin d needs to be taken with k2. If you go onto amazon there is a book called k2 and the calcium paradox. How a little vitamin could save your life. Just reading the blurb is helpful.

Yes if someone took my t3 off me I would not function and loads of us self medicate either with that or ndt. For me mine was removed after 15 years. There are no such things as T4 doctors just people who are doing what they are told or are just plain ingorant.

Suze and kitten are spot on re hormones birth control pills containing oestrogen messes up the thyroid and absorption of meds. Only 1% of t4 is absorbed according to a research paper I read if you take bct. Therefore without t3 that leaves you with nothing.

As a girl I was fortunate never to have migraines from hormones but I've been to several apts with my best friend who has hurrendous ones after the birth of her daughter. They all contradicted each other to the point she was in tears and I was frustrated.

After asking a friend who is a renown thyroid specialist I think I got somewhere. It depends upon when you get the headaches. First 14 days tend to be oestrogen second 14 days more progesterone issues.( Again everyone is different)

That said my advice is cut the bct get some T3 wait and have your hormones tested. 20 mcg of lyothronine is not a large dose and if you fund it yourself your tsh can be less than 1. Most people have suppressed ones anyway.

Also a 2/16 hydroxi test( private) tells you if your oestrogen levels are in ratio. As with cholesterol we have 3 and if they are not in line that is v serious. But v easily fixed.

I feel that all the pressure and incorrect meds/ no support is the issue. I am guessing but doubt you are clinically depressed. Gps love to give amatryptaline for migraines please resist if you can as you can't see the wood from the trees so to speak. Some women find fever few helpful other less so. They are natural and worth a try.

I would pay for a full blue horizon finger prick test - Say thyroid plus 11. Cost massively reduced thanks to thyroid uk and is £99.

The t4 will be affected whilst on bct. That said you will get the t3 ,antibodies, vit d folate, b 12 and ferritin etc.

Good luck and remember many of us have walked a long dark lonely path- you will see sun soon.

Take care.

Oobie_ profile image
Oobie_ in reply to Howard39

I am in Australia but I will find the equivalent of such tests here. I am afraid to go off the bcp, the migraines are that bad. I was ending up having only one good week a month. I have come to really dread ovulating and getting my period. Even on this bcp, when the dose of progestin rises it affects me badly but it is better than the others I've tried.

I've actually got a prescription for cymbalta here. They would rather give me that than t3. Getting a scrip for it was certainly a lot easier. I'm desperate enough to take it but I fear having to off it. I've been that route before. I was diagnosed with depression before I finally got the hashis diagnosis (which I had to insist on).

I might be able to handle all this but having a toddler increases my feelings of worthlessness over this. She has actually driven to tears many times and I know it's not her fault but I'm just so so so tired. I try so hard and yet when this happens I feel like an even more worthless person, which makes me cry even harder.

I could no longer bear the cold and tears and took t3 there and I did feel better. At this point I think I will just have to do that. Probably just stop taking it a week before blood tests - that'll work, right? I really do need those patches. I'm getting really desperate here.

I found my other prescription for t3. Hopefully it's still valid. I'm going to try to buy it tomorrow and then after that I would have to find an online source.

I've been dumped by two doctors in a row because i couldn't drop the t3 but at this point I don't know what else to do but just take it and skip it before bloods.

Oobie_ profile image
Oobie_ in reply to Howard39

When they tested my oestrogen they said it was fine, it was within range, but it was one point off out of range on the low end. They said that didn't matter as it fluctuates but I've heard that one before ("within range") so I decided to try bcp and it did give me extra strength. And a whole lot of other side effects, that'll have to be another post. Tbh I think it's nasty stuff but I'm just so desperate. I was on t4 + t3 and still felt horrid. I think I was missing that. But for me to be able to finally get a doctor to give me that I had drop t3.

I would so be self medicating if not for that. If I could get all the hormones I needed myself I think I might fare better than this. I so hate the way I am now.

Oh and I used to take supplements and was gf but after a series of doctors (and I could go on about other stuff on how they treated me) told me it's all a fad and made me out to be some hypochondriac, since I wasn't feeling better and i was getting really skint, I stopped. I probably shouldn't have.

I just took k2, fish oil with d3, and liver capsule there. I couldn't finish my food. And I've to eat everything with vinegar otherwise it's quicker for me throw up food. Sorry if TMI. I'm so hungry but it's so hard to eat.

Oobie_ profile image
Oobie_ in reply to Howard39

I knew taking bcp affected the level of thyroid meds but I didn't realise the absorption rate on it could *that* low. Thanks for telling me.

Eddie83 profile image
Eddie83

T3 rocks! I could never go off it, there are just too many benefits. The only time in my life I've had frequent headaches, was when I was hypothyroid. I think you need to do two things:

1) Self treat. Get T3 off the internet and start treating yourself since the docs you've seen are bozos. It sounds like it could take months or years for you to find a reasonable doc; you need to get out of the hole you are in ASAP.

2) Get onto a supplement program! Yes, nutrition does matter. You must make sure your Bs, D3, iron, trace minerals, etc. etc. are all sufficiently high. And if your sleep is terrible, check your total blood protein and use free amino acids if necessary.

I will message you with the site of one T3 supplier. It sounds like you already know how much T3 you need, but if you have problems, message me if you decide you need dosage advice.

Oobie_ profile image
Oobie_ in reply to Eddie83

Assuming I am able to source t3 or ndt, how long before a blood test should I stop it so lab values won't give me bother with doctors?

Eddie83 profile image
Eddie83 in reply to Oobie_

I guess my response to that would be, assuming you treat yourself and feel well, why not just tell the doc that he does not know what he is doing and so you are treating yourself, and the truth of what you are doing is in how you FEEL? Doctors are obsessed with lab testing, but when it comes down to it, testing is irrelevant if you feel well.

But if you decide you must go ahead and fool the doctor: the half-life of T3 is about 12 hours (at least, in my body, I have tested me). So after 5-6 half lives (2.5-3 days), the effect of T3 on your body should have mostly gone away; your FT3 should be down to what your body is able to convert from T4.

puncturedbicycle profile image
puncturedbicycle in reply to Eddie83

Oobie_ what Eddie83 is suggesting may bring the t3 down but the tsh may remain lower than usual and the t4 may also drop. There's no way to know for sure what your results will look like. Best to stop t3 a few days before the bloods and hope for the best, or even better, see if you can have your own private tests done. Then you don't have to suffer through 3 days without t3.

Howard39 profile image
Howard39 in reply to puncturedbicycle

Hi puncturedbicycle

That is v sound advice. The tsh will still be affected for many days.

My thyroid specialist told me that if you stop meds that it takes 14 days , on average- as we are all different-for everyone to medication free.

Far better like you said to have a private test.

puncturedbicycle profile image
puncturedbicycle in reply to Howard39

I know for some people it seems like it will never come up and I think there is reason to believe it may remain low in some individuals.

For me, on 50 levo and 10t3, for whatever reason I went from very low (suppressed) tsh to 5ish without changing my dose at all but my thyroid has been up and down like a yoyo and that happened over a period of months. The whole thing is a bit mysterious.

I often think if you can afford to spring for the private test at least you can keep an eye on things and won't have your meds taken from you, but it is out of reach of some people.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

Derp. A fortnight without t3 and that's me keeping my fingers crossed my tsh and t4 will be responsive to t3 withdrawal.

I'm going to the surgery to get my results. At this point I'm not even sure whether I should mention t3 really helped.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

I googled. No private tests here in au. I will Google harder but even in body building forums the answer is the same.

Josiesmum profile image
Josiesmum

Can I ask what you mean by "on sugar days"?

Oobie_ profile image
Oobie_ in reply to Josiesmum

When it's the placebo pills on the birth control (to bring about your period). There are no hormones in it. Just sugar, I think, so I call them sugar pills. It's usually the last line on the birth control sheet.

Josiesmum profile image
Josiesmum in reply to Oobie_

Thanks for the explanation. Sorry you're feeling so bad. Seems like your body is super sensitive to whatever you're taking. Have you investigated food sensitivities as a possibly contributory factor? Worth a trial of the AIP to see if your symptoms improve. Many people are unaware that they have sensitivities causing symptoms until they change diet and get relief:

thepaleomom.com/the-autoimm...

Also, have your iron/ferritin been tested? Low levels of these can cause exhaustion.

Good luck x

Oobie_ profile image
Oobie_ in reply to Josiesmum

I will follow up on Tuesday. My Mind has been so fogged I think he only took cbc and not ferritin so I'll ask ferritin and my other results. It's a holiday here today.

I am going to go gf again and I have tried the aip diet. I did seem to feel less bloated on it but I just don't understand why I don't feel good and I feel even so tired after eating.

I was on anti inflammatories for more than a decade for issues that turned it to be quite fixable by t4 + t3 and supplements and I wonder if this has done something to my gut permanently.

I've also tried the pre and probiotic stuff but it seems like i just can't seem to fix it and I also get these stabby pains on the belly area, on the left side.

I will give it another try. Thanks for the link and for replying.

missyc73 profile image
missyc73

I am so sorry that you are having to go through this.

I am in no way an expert in any of this. But in my situation I have a lot of the same symptoms as you are describing. Extreme headaches along with debilitating depression. I also can track mine to ovulation. In my personal research this is progesterone related. Check with the kind of birth control you are on. Most are progesterone based. I am being tested (skin prick) this Thursday for progesterone allergy. "Autoimmune progesterone dermatitis" is technical name. I have hypothyroidism also.

Praying you will find answers and healing.

Oobie_ profile image
Oobie_ in reply to missyc73

The endo did suggest the mirena coil +oestrogen patches but I fear that even with the low dose the efficient delivery system might make me overreact to it as well. Then there's the fear of the insertion because the last time i had a scan there it was so painful when it hit some areas, I'm not sure how I'll cope with that iud inside me. And then I've read horror stories of people wanting it out but doctors don't believe them on the side effects and they were stuck with it longer than they wanted. After my experience with doctors I am quite afraid to try this.

As for the sensitivity to progesterone, I think you are spot on. I tried the shot to deal with my migraines and it made me allergic to the Sun?!!!??? The massive hives, rashes and itching, and it made me more tired and depressed. I'm never ever ever getting the shot again. I spent the month using steroids and antihistamines and staying away from Sun until it cleared out of my system. thank God it was only a month's worth that was injected into me. Even if I wear clothes I would get these hives and rashes but was the worst where the Sun hit me directly. One of the worst decisions I've made to try to deal with the migraines, for sure.

The endo said if I've got a uterus I need it (progesterone) and my best bet is the coil. I am at my happiest and strongest 3 days after stopping the active pills and into the patch (until this hypo hit me hard). And I must admit even with the patch it's not easy. It is better but I still feel the drop in hormones and have this horrible headache. I feel like my face and scalp has been beaten up. I have cut my hair myself on such days, I couldn't bear the weight. I still get Migraine auras. And migraines. But not bad enough to beg for a shot so even if it's like this at least it wasn't like before. This is me improved....

What is your solution to this? Can you please suggest a bcp that hasn't got such strong progestin? Logynon is the best I've found so far. The others just made me even more loopy and made my back pain worse. The previous endo focused on making me look like I'm just plain crazy instead of truly listening to me when I was telling her the pills were affecting me badly. ("Many women take it and they are fine...."). This recent endo does believe me so I did my best to cooperate with him. I was ok for a while dropping the t3 but here I am now. ;(

I really don't know what to do anymore. It's as if my body has really betrayed me and I feel like I've just not got energy to fight.

I didn't expect my body to fail me like this post partum and beyond. My Daughter will be 3 in a few months. I cannot pick her up without feeling like i will throw up. :( Sometimes I do. I have had to get ear defenders (like what workmen use) because I get so sensitive to noise and what with tantrums....

I cannot be like this whilst being a full time mother. I feel so... Inadequate. And that I'm letting everyone down.

If you've got a dream birth control Brand or bhrt regimen I would love to hear it. But nothing with norethindrone. That was the worst for my back. It spasmed and didn't let go until I switched bcp.

Thanks so much for replying to my post. Hopefully we can help each other if I manage to find a solution to this. May I ask how you are coping?

puncturedbicycle profile image
puncturedbicycle in reply to Oobie_

Oobie_ I know it isn't much consolation but keep in mind that awful desperate lack of confidence and feeling inadequate is a hypo symptom. I used to suffer w depression (possibly related to thyroid hormone but I was not diagnosed until much later) and I have never felt so desperate as when I was very hypo. I know it doesn't stop you feeling that way but if you can find a way to view it as a symptom of a medical problem and not a part of you it might help.

Oobie_ profile image
Oobie_ in reply to puncturedbicycle

Thank you for reminding me. I've been loathing myself for quite sometime now and it has gotten really worse. I cannot wait to be not like this.

Oobie_ profile image
Oobie_ in reply to missyc73

Please keep me posted on your pin prick test.

missyc73 profile image
missyc73 in reply to Oobie_

Had test done this morning, it was positive. Looking at getting lupron shot to keep from ovulating.

Oobie_ profile image
Oobie_

On a good note after 24 hours of dosing on 5 mcg t3 every 4-6 hours I'm crying less.

missyc73 profile image
missyc73

I'm sorry I don't have any answers for you. Sorry if this is tmi, I now have a tubal ligation so I don't need BC. But before this I had to resort to "natural" BC options. It is hard to comprehend your body fighting against something it is supposed to produce. I am 10 days to my period. I started with the headaches today, I'm assuming the hives will be coming soon. The fatigue and depression along with anxiety are overwhelming at times. I have to continually reminded myself of all the blessings I do have. My husband has been wonderful during all my "episodes" times when I lose it. I keep telling myself to keep fighting. Just having a dr that has listened to me and is willing to look for causes has been wonderful. This took me 2 yrs and several DR's to find. It has also helped to know that I am not alone. Not that I want others to be suffering. But knowing others are going through this and being able to see what has worked and not worked for them is therapeutic.

I know that this is not a solution to what you are going through but I hope it helps.

Oobie_ profile image
Oobie_ in reply to missyc73

Thanks for sharing. It helps to know I'm not crazy and alone. I'm not on bcp for birth control. I was asking for hrt and in spite of the fact bcp contains more hormones it's much easier to get so I kinda stuck with it. I'm actually relying on it for hormones and not birth control itself. I just couldn't tolerate my own body's hormonal fluctuations. In spite of the side effects in the end i chose to let the bcp take over. It gives me a steady dose and when the sugar days come I slap on the patch.

What I was really hoping for was oestrogen patches for after I ovulate because I think the ratio of progesterone to oestrogen I've got is wrong. But no gp would give it to me as I'm too young, they said (and yet I felt like an old hag, in appearance, weakness, bitterness, isolation, etc). They were quick enough to prescribe bcp though. Anyway, this is how events have turned out for me. I started out looking for bhrt and now I'm on bcp + patches.

I hate that feeling too. What's supposed to be a normal occurrence is now a nightmare. I had other issues when I was breastfeeding but no migraines. It came back worse than before when I ran out of milk.

I'm on triphasic bcp and I get the same thing on the final week, like I'm not myself, and I'm aware of it. But this the best Deal going for me so far.

Feel free to message me on this. I've no answers either but maybe you can learn from my mistakes. I've tried 4 bcps. Used creams, and tried 2 doses of patches.

jennygrigg profile image
jennygrigg

My heart goes out to you, feeling so poorly :( The whole endocrine system is so very complex and intrinsically linked. I know you said you had sex hormones tested, were they with a 24 hour saliva test? As I think saliva is possibly the best way, serum is just at one point in time. My daughter, who has both hashimotos and addisons disease, began having migraines two years ago and with a great deal of research we found that they are related to being hypo and having unhappy adrenals, because these things actually go with estrogen dominance. (Not sure what comes first, rather like the chicken and the egg) With estrogen dominance/adrenal fatigue comes high copper levels and migraines are very much linked to these issues. In the short term we used reasonable doses of B2 and that helped a lot. Then was the process of both lowering estrogen and copper levels (it might be worth doing an internet search on this). I also think that going back on some t3, which worked before, may be helpful. My daughter found she actually feels best on t3 only - and she takes very high amounts because we suspect some type of resistance. She tried t4 and ndt, all made her feel even more hypo. It is also critical to ensure you have good iron levels and good cortisol levels to ensure your body can use the thyroid hormone you take. I truly believe if you can optimise your thyroid through the correct type and dose of exogenous thyroid hormone then many of the other issues you have will go. So, as others have suggested, working on the thyroid hormones may be the first step to take, otherwise when you are feeling so unwell and have a toddler to care for too, it can all be too overwhelming. One step at a time:) Good luck and take care:) x

Oobie_ profile image
Oobie_ in reply to jennygrigg

I don't even try mentioning adrenals to doctors now. They are so quick to fob me off as a nut, even if I think you are absolutely right. When I mention saliva tests the look I get is worse.

Was your daughter's back sore in a funny way with her adrenal issues? And did she find t4 mean to her heart as well?

I know most people go on about oestrogen dominance but idk .. after I gave birth and had infections and lost so much iron (ferritin so low) . My ovary shrunk and I can really feel I'm low on it. I didn't feel as much a woman. The lack of it added so much to my unhappiness. I tried raising t4 and t3 at that time and it didn't help. It is like my reproductive system decided to follow on my thyroid's footsteps.

Your daughter is so lucky to have you as a mother and i hope her good endo outlives her. They are hard come by.

I think my big problem with them is that I only feel good with a tsh of less than one and lots of t3 and the lab values that come out horrifies them.

Thanks so much for replying. It's so hard to be a good mother being like this but i did take the leftover t3 I got here and I'm no longer crying as much.

I did try taking Zinc to combat copper and to help my nails (ridges tearing like paper) and I cannot tolerate it. It makes me throw up. I've tried 3x. The bottle is just sitting here. I throw up a lot as it is. It's hard to swallow.

I will ask for a ferritin test tomorrow. It took me 4 months to raise my iron to an acceptable level the last time this happened and I just haven't got the time to get better with a toddler if I leave it too late. I wasn't thinking straight when I went to see the doc, I was asking for valium because I kept on crying but I got tft, cbc, and LFT tests. I asked for vit d and forgot about ferritin :/ My brain is functioning better now I've taken the t3 too. There is more clarity and I see colours better.

Thanks so much for replying. I feel less alone. To the people around me i was just someone to be feared because of the emotional effects of lack of t3 and fatigue. The well meaning comments I've gotten hurts, still. I know they are right But I couldn't help myself, I was really running on empty. Reading the replies on here made me less ashamed of who I am. It really helps to have people who understand. I felt so utterly alone and tired. I cannot thank the people who have replied to me enough.

jennygrigg profile image
jennygrigg in reply to Oobie_

Omg god doctors and adrenals!!! We don't see an endo here in Australia just a nutritional doctor who thankfully will give us the scripts and tests we ask for after doing research. You are right too, you know when something is not right with your body as I knew I had to find answers for my daughter when doctors kept telling me everything is 'normal'! Yes her back did hurt with adrenals, above the kidneys. She often experienced heart palpitations, but we realised as time went on that was related to her low adrenal function. I am glad you took the t3 and it has helped. My daughter's tsh, all blood results in fact, freak the doctors out - always suppressed, t4 low and t3 above range. But this is how t3 only therapy works. She is now trying Dr John Lowes protocol as she is still not optimised (i don't like to put her t3 dose on here as it is very high, but she needs more still) Have a read of the info at rt3-adrenals.org, you will find some really helpful stuff and when you are ready there is advice on self testing and what your levels of everything should be. It is where i found how to treat my daughter- i didn't know about other forums back then. You may have felt awful with the zinc (you have to be careful with the dose) as it lowers cortisol and if you already have low cortisol it will make you feel terrible. I can't stress the importance of happy adrenals enough. My daughter had a dreadful year last year, my beautiful bubbly girl didn't sleep for a year and was suicidal, despite trying every drug available for depression it wasn't until we increased her dose of hydrocortisone that she returned to her normal happy functional self - within 24 hours! So do keep it in mind. Probably working on you dose of t3 is best at this stage - rt3-adrenals.org have a protocol to follow on t3 dosing. Remember, you are not alone, the wonderful people on these forums are here to help :) As for friends and family who don't understand!!!! Don't get me started:( My daughter also ended up with anorexia after year 12 (studies show that high copper levels predispose someone to this) and i had a close friend who told me to use tough love!!! Would she say that to someone with cancer? Sorry, i am off point there! Despite your health you are doing your best for your baby- always remember that:) Take care x

Oobie_ profile image
Oobie_ in reply to jennygrigg

Funny you mention that. I had to take prednisolone for something and it was easier to eat and I felt better. I didn't gag nor throw up food all the time I was taking it.

I will save up money to go to a functional doctor if I get dumped again but at this point I can no longer abide by their gold standard.

I don't think you are off the point about your daughter. I too lost plenty of weight when I got super hypo. It was hard to eat. It is terrible situation and you did the right thing not going the tough love route. As the years go on I find other people's "just trying to help" comments incredibly irritating. If it pertains to my daughter it's 10x worse. It must have been heartbreaking for you to see her suffer, get sub par treatment, and then hear such comments.

Oobie_ profile image
Oobie_ in reply to jennygrigg

I will try b2 again. I used to take that and b6 for migraines. It didn't help much at the time. It might've if it was the only problem but looking back and posting on here made realise I was, and once more, could be going through quite a bit of issues. Now I can add endophobia to the list.

Josiesmum profile image
Josiesmum in reply to Oobie_

Ask GP to test TSH, T4, Free T3, iron, ferritin, folate, B12 and vitamin D. You could also ask for cortisol blood test if that is all they will do. I asked for my daughter's cortisol to be tested on advice from here and it was very low (she was having stabbing pains in her back around kidneys) and she was referred to Endo. As a side note she cannot take BC as it gives her severe depression.

Post the results in a new message and experienced members will give advice and feedback.

Here are a few links about migraines, in case there's anything here you haven't thought of:

articles.mercola.com/sites/...

greenmedinfo.com/disease/he...

huffingtonpost.com/2012/07/...

I used to get migraines (when I lived in Australia - I think it was related to very bright sun and dehydration, plus stress and sensitivity to chocolate and coffee). I tried a course of acupuncture and the severity and frequency reduced, so that could be something to try.

Also, have you been tested for celiac?

Good luck x

Oobie_ profile image
Oobie_ in reply to Josiesmum

I've asked for the others. I will add folate and b12 and ferritin tomorrow. I don't even know how to approach the cortisol thing but I'll give it a bash. Mine was tested before and it was "fine". I don't even know what that word really means anymore.

And yes, I do get the stabby pains but mine is on the left side of tummy and back.

Bcp made me suicidal. But I was that desperate. I think it's nasty stuff but at this point, for me, it's better than nothing. I'm wondering if I should try a different one.

Thanks so much for replying. I will check links.

Oobie_ profile image
Oobie_ in reply to Josiesmum

Oh and they tested me for coeliac. At that time when I was on a gf diet. Overall the medical community has generally made me look like some crazy hypochondriac. So it tested negative and they told me the diet was probably making my life harder and a fad.

Josiesmum profile image
Josiesmum in reply to Oobie_

Unfortunately you need to be eating gluten to test positive for celiac, so if you're eating it at the moment may be worth getting another test. Stay strong and don't let them get you down x

Oobie_ profile image
Oobie_ in reply to Josiesmum

I'm really trying. At least I'm crying less now with t3. At this point I might qualify as the poster girl for hashis tears and despair. All the kind words here really helped.

Oobie_ profile image
Oobie_

I got my lab results. They didn't check ft3 but I've figured out what's going on. The ft4 is on the high end and i think it has been pooling and not converting.

I am suspending taking t4 for a week and then will consider going back on it on a reduced dose and am continuing to take t3 as needed. V

My results are as follows:

Tsh. 0.31. (0.5-5.0)

Ft4. 20.3 (11-21)

Ft3. Not measured because ft4 was within range.

Comment: Results suggest that decrease in dosage might be indicated

Iron 22.6 (5.0-30.0)

Transferrin 2.9 (2.0-3.6)

Saturation 35 (10-45)

Ferritin 80 (20-300)

Comment: normal iron studies

*Mild elevation of GGT

25OH vit D 56 (50-160)

The gp just wanted me to see the endo and I didn't manage to bring up checking folate, b12.

I've made my appointment with the endo sooner. I'm not expecting much understanding with regards to the need for t3.

Is there a way to clear this t4 off me sooner? My heart is so tired and joints hurt and I'm so weak and cold. I'm still oh so tired but at least no longer as depressed since restarting t3. I think I need to clear off t4. It is nasty to me at this dose :(

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