SlowDragonAdministrator4 years ago

Your FT4 and FT3 are both right at bottom of range

TSH is just above top of range

Antibodies appear to be negative, but you can have Hashimoto's and never have raised antibodies

Have you had an ultrasound scan of your thyroid? This can be helpful

Iron. - need range on this result

Also need ferritin tested

B12 - under 500 can cause symptoms

You need folate and vitamin D tested

Getting vitamins tested and optimal is essential

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Depression is linked to low FT3

Two options

See if GP will prescribe trial of 50mcg Levothyroxine to see if this helps. Bloods tested 6-8 weeks after and dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in the range

Or if GP refuses Ask for referral to endocrinologist or psychologist for trial of Levothyroxine

If in the UK email Dionne at Thyroid Uk for list of recommended thyroid specialists

tukadmin@thyroiduk.org

Jeanvieve4 years ago

I started down this path a few years ago after being diagnosed with everything under the sun, very similar depression, chronic fatigue, fibromyalgia and more. Finally i was tested for thyroid and had very similar numbers to yours, it's frustrating finding gp/endocrinologist willing to put you on Levothyroxine with these numbers. Once you find they will

probably start you at 50 and increment by 25s until you hit your ideal dose. Be patient you will have ups and downs with your symptoms but once you find the right dose and have enough time with it in your system it is worth it. I am on 100mcg now and have been for 2+years and i went from feeling worthless and being house bound to being the person i knew i could be. Chin up as it does get better.

Mitzvah_heroes in reply to Jeanvieve4 years ago

Jeanvieve, you made my day :)! Not so scared anymore :)!!!

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Ekrenz4 years ago

I also have a similar story i had been diagnosed with quite a few things prior to about a year and a half ago. I was diagnosed with depression, borderline, chronic fatigue/fibromyalgia and many more. Then my husband and i moved, had to get a new gp and whammo i was told i had hypothyroid. It was a struggle while we were trying to find the right dose, mostly i struggled with is this the right diagnosis when i had a bad thyroid day. It felt more normal for me to try a medication and not expect it to work and low and behold it didn't. Surprising as until now they weren't treating the right thing. The other thing i struggled with was resting when i felt i needed to. I felt guilty as was used to working and at this point hadn't been working for a while. I can attest that this has changed my life well actually given me back my life. So my best advice can be narrowed down to a few of points:

1. Be patient with yourself and your illness.

2. Sleep when you need to and don't be hard on yourself.

3. Be persistent until you find a Dr that will listen and work with you on medications.

It can give you your life back, it did mine!!

Good luck

Mitzvah_heroes in reply to Ekrenz4 years ago

Your words brought tears of hope to my eyes. Thank you so much. I'm not sure if you are aware of this but your sage advice completely took me to a place where I will do as you said, drop the guilt, and come back strong to the world!!!

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Rhettberk4 years ago

I had a heck of a time trying to find a dr that would give me Levo. Now that i have life is getting better when i had pretty well given up. Be patient with yourself and persistent with finding the right dr.

Hypogirlss4 years ago

I also had a hard time finding a dr to diagnose this. I was chronically fatigued, depressed and had massive mood swings all the time, and was told i had a variety of disorders ranging from bipolar, borderline personality to run of the mill anxiety/depression. During this time i unfortunately pushed plenty of good people away, fortunately for me i was able to make amends with most of them. I lived with years of this and tried numerous ssri/anti psychotic medications and it turned out that all i needed was one tiny little pill (Levo) and almost all of my symptoms gone or much more manageable. Not that i am saying that ssri/snri/anti psychotics don't have their place but as part of the diagnosis process Dr's should check thyroid too.

So my advice would be similar to a couple of the other people who have replied already be patient with yourself and dosing. In my case would've liked to explain to loved ones that at times i didn't have the energy, felt depressed or had my moods change that it wasn't their fault or even how i felt for that matter. Also you need to rest when you need to rest without guilt *IMPORTANT. Most importantly to tell myself it's difficult but it DOES GET BETTER even when you feel like you've run out of hope or the will to try, if this does happen it's ok to lean on those who love you rather than push those people away.

Don't give up and good luck

Mitzvah_heroes4 years ago

Thank you so much hypogirlss. I can see you are very committed to helping others by telling your story. There may be some pitfalls to social media - but, you know, the words of those who have been there will, inevitably, safe others! You, as well as, the previous posters are all "Mitzvah Heroes" - see book "Angels on Earth" by Laura Schroff - a mitzvah hero is someone who does good deeds out of their hearts and without any gain from it

Hypogirlss in reply to Mitzvah_heroes4 years ago

Hi Mitzvah_heroes,

It can be incredibly difficult and feel hopeless while trying to find dr to help or while dosing. We all need to have people to help us and to lean on during these times. I hope that you have someone in your life that is there. You can some suppprt through avenues like this as well but not quite the same as someone who knows you and really cares. I know for myself i certainly got to where it felt completely hopeless but it does get better i promise.

On another note i googled "Angels on Earth" the other day and it just arrived, I've only read 3 pages and seems incredible!! Thank you for the recommendation! That little thing in itself changed my life and made my life a bit better anyone else that sees this post, i recommend this book so far seems amazing.

Hang in there Mitzvah i know it can feel overwhelming and hopeless but it does get better. Good luck and... BELIEVE!

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Mitzvah_heroes4 years ago

Hello group,

This is Mitzvah_heroes again. I know there is certainly a more direct way to ask another question relating to my original post, but, I'm a wee bit technologically weak. With the numbers from lab work that I had provided, I was wondering if having received a week of 25 mcg of Levothyroxine, followed by a couple of weeks of 50 mcg (when my husband went back to the doctor and said that this dosage was not high enough, even for a starting dose), and now almost 5 weeks of 75 mcg of the Levothyroxine and still feeling mighty awful. Perhaps worse then previously. Was there any results in my blood work that indicated that I may be a poor converter of t4 to t3? Also, in the midst of this I have had 6 weeks of b12 injections which has caused a huge breakout problem all over my face and upper back. I had suffered acne on occasion for most of my life, but nothing like these very sore postules. At least, the reading I've undertaken seems to indicate that this breakout has resulted from the b12 injections. I have stopped all b12 supplementation for now. I go for blood work on the 15th of this month to see where my level are. My apologies for the being less than my cheery self - I suppose, this has dragged on so long, I think I may have forgotten her behind a door or something :). Please, ANY insights would be greatly welcomed. Thank you again for making this forum a possibility.

Taabag in reply to Mitzvah_heroes4 years ago

Hi Mitzvah_heroes,

I love your name btw. I can't claim that i am an expert but i know my situation and that of a few others. 25 mcg is a low starting dose but unfortunately not that uncommon, glad to see at least your doc raised your dose quite early and it is completely normal to have dose upped by 25 each time. For me my symptoms did get worse at and were inconsistent while we were dosing. Terribly frustrating and made me doubt diagnosos along with my over prognosis. So far as your blood work my experience was that they couldn't tell if low t4 or poor conversion until t4 was added unless bloodwork shows that high t4 and low t3 and both of yours are relatively low. In my opinion it seems pretty clears that it looks like hashi's. I also had to go on b12 (methylcobalamin) and i broke out as well, it took a couple of months for the spots to stop appearing which only added to my frustration and took away from my hope. I switched over to Cyanocobalamin and it helped.

I can tell you it took me a while for me to find the right dose 150mcg but now that I'm there i feel better than i ever could have imagined and i feel like i always wanted to. So please be patient and remember it will feel hopeless at times and feel like no progress or even getting worse but it WILL GET BETTER. Most of us with hypo have felt like this in the beginning (key to remember in the beginning). But try not to get discouraged it will get better and reach out to loved ones and forums like this. We are here.

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Mitzvah_heroes in reply to Taabag4 years ago

Taabag,

You managed a smile out of me this morning, which was a steep hill to climb :). Thank you for your willingness to share your time bringing me information, experience, and hope.

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snapcracklepop12320 in reply to Mitzvah_heroes4 years ago

I've been reading through all of your posts and it feels like you, hypogirlss and the others are retelling my story. I went through all sorts of struggles from finding a diagnosis, problems dosing and all of the struggle s doubts and dark times that this included. Mostly for me it was fatigue, depression and awful mood swings which went on for at least 11 years. I was basically laid up in bed for over 9 years amd depressed for all 11 years until i got diagnosis and spent about a year finding doc that would give me medication as my numbers didn't exceed that magic number. My mood swings went on for about 7 years and i did my best to push everyone i cared about away and for the most part in that i was "successful" with the exception of my stubborn husband whom i love dearly.

From what i see in your blood work i would have to agree taabag is right from my experience. But once you find your happy spot with medication all of the hopelessness and alot of the symptoms will disappear and once it really starts things just start to roll. Advice i can give would be.

Be patient with yourself and your recovery and don't be to demanding or critical of yourself.

It will get better so on days when you don't feel well remember that and talk to people you love and trust.

I have now been on right medication and dose for 4 years at the age of 48 and i have a new lease on life.

Stay hopeful and trust us it will get better.

Btw i just googled that book and ordered it too, it sounds amazing.

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Mitzvah_heroes in reply to snapcracklepop123204 years ago

My soul thanks you 💖

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Hypogirlss in reply to Mitzvah_heroes4 years ago

Hi again Mitzvah_heroes,

I'm so sorry to hear that you are struggling at the moment my heart goes out to you, although that I think is certainly normal. It was definitely the case with me, I had some pretty terrible and dark days in the beginning. My Dr started me off at 25 for about a month and a half and I went up by increments of 25 at a time and stayed at each level for about the same length of time. My symptoms definitely would come and go during this time which I found incredibly frustrating. I also agree with Taabag in that my understanding of the t4/t3 thing and whether or not you are a poor converter I have a cousin who is in fact a poor converter who spent a while on Levo and they figured out not the right medication so switched to t3 and it has made a huge difference. I did not have any issue with b12 but I've heard from plenty of people who have and i don't believe that it is all that unusual. I can't speak from experience on that although i did have low iron and low b12. Do not apologize about being less than your cheery self as I would guess a good portion of the people on this forum have been there. On another note this book is wonderful I can't put it down. So thank you for that, I've already recommended it to a few friends and family. Also the other posters are correct when they say try not to get discouraged and it will get better even when you have times when it does not feel like that is even possible. Do not let everything build up if you can avoid it talk to your husband or anyone that you have in your life to talk to that you trust, we all need a hand sometimes so no guilt and reach out when you need to. If that isn't possible then absolutely reach out to us on this forum we are here to help each other. It is important! Chin up and thanks again for the wonderful book recommendation. I sense that you will get to where you are the one that will be helping others once you start feeling better. My thoughts are with you Mitzvah!

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Mitzvah_heroes in reply to Hypogirlss4 years ago

Invisible threads is right, isn't it 😊? I will write more when rested. Thank you, thank you🙅. You're darn right I'll be helping take the helm once I've reached my magic😊

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kkromm in reply to Mitzvah_heroes4 years ago

Hi Mitzvah heroes,

I just wanted to let you know that I've also had a very similar experience. I had all sorts of issues with vitb12 shots acne as well as digestive issues. It does clear up eventually, for me took couple of months. So far as the dosing goes i think it is very common to start at 25 or 50 mcg and increment by 25 every 6 weeks. Not sure why they don't start at higher doses but they never really seem to. Do not apologize for not being your "usual cheerful self", i know for myself i felt down right dreadful during dosing. I went to some really dark places. I felt depression, pain and exhaustion which made me horribly frustrated. But once you find your happy dose of the right medication your life WILL CHANGE. So please stay strong and hopeful through this process, you are not alone. It will get better.

Btw I'm googling that book as soon as I've finished this post. Thank you for the recommendation. 😊

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Mitzvah_heroes in reply to kkromm4 years ago

💖 to Kkromm. You made my morning!! Better yet, my day!!!

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snapcracklepop12320 in reply to Mitzvah_heroes4 years ago

Hello mitzvah,

Another thing I just remembered was going back to having "good/bad hypo days", is this; during my dosing period and I assume might still hold true today. I always went for my blood work on days that I didn't feel bad and cancelled appointments when I did not feel well. However I was forced to go on one of those bad days and my blood work results showed the difference. From good day to bad day depending on the test my numbers would at times have a wide range. For instance my tsh levels went from 0.6 to 4.1 and back to 1.3 in a matter of a week. Im not too sure what the numbers truly mean but I also know that my symptoms felt like that on those days. Here I am feeling happy and strong both things I honestly never thought would ever be again. I thought i had lost myself behind a door at times too. So chin up and stay strong and do not apologize for a bad day or week, trust me we've been there. The dosing period will end and you will find out what is causing your symptoms (and feel better). Also in my case I also had low iron, cortisol and b12 which also needed treatment. It can be a long journey but the hardest part is diagnosis and dosing you are almost there. My "stubborn husband", cat and myself all say loud and clear mitzvah be patient, persistent and it will get better.

Love the book so far btw.

Thanks I've already bought other copies for friends and family.

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Mitzvah_heroes in reply to snapcracklepop123204 years ago

Sitting here with emotional tears streaming down my cheeks at reading the lovely, encouraging remarks you took the time to pen to me. I can tell you, not a second of your time was wasted. In fact, each second of your time has likely given me, at least, an equivalent day of hope. Sound like the "triangle" effect helped you, as well. All we really need is one fantastic cat, and an equally fantastic husband, don't we? Bottomless appreciation Snap, Crackle, Pop :). You are a peaceful, healing sound, just like the Rice Krispies you relate yourself to :). Invisible Threads, indeed!

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snapcracklepop12320 in reply to Mitzvah_heroes4 years ago

Hi Mitzvah,

Now you have emotional tears running down my cheeks. You are right that little triangle is a very powerful one indeed. I'm happy that it gives you hope! For the record I'm a slow typer so hopefully if you do indeed get a day per minute then you are good for weeks.

It's funny you call it a triangle, we have a similar analogy in our little family. You made me cry with your message and I had to go give both my kitty and my husband both big hugs and kisses. I honestly don't know that I would've made it through this without them, even though my husband was often the target of my frustration. So trust me when I say that I've been there with so many ups and downs, both with hypo and I had some pretty bad "life changes" going on through out this journey.

I can't put this book down, I never really read books a second time (life is too short), but I think I'm going to make an exception for this masterpiece. Thanks again and please stay positive and know that no matter how bad it feels it will pass. After every storm there is sunshine/calm. Remember to stay patient and no guilt during rough times.

Happy healing

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Mitzvah_heroes in reply to snapcracklepop123204 years ago

Hi there Snap Crackle Pop! Is it possible to chat off forum? I'm not sure if this web blog allows for that?

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Ekrenz4 years ago

Hi Mitzvah_heroes,

I know I needed reminders in the beginning as i doubted my dianosis, my ability to find the solution even my want to try. So again please remember,

1. Be patient with yourself and your illness.

2. Sleep when you need to and don't be hard on yourself.

3. Be persistent until you find a Dr that will listen and work with you on medications. Although it now sounds like you have a dr that has gotten you started on medication that is a good step. Just be patient with your progress and know that its a matter of time until you find correct medication and dose for you.

It will give you your life back, like it did mine!! And like someone above said BELIEVE!!

Btw i think i'm going to google that book too.

Mitzvah_heroes in reply to Ekrenz4 years ago

I really appreciate your shaking the pom poms for me again - nice to have some cheerleading😊. The book is fabulous - I'm a bit of a sap, and have been known to cry at the occasional commercial 😉 - I think only 3 or 4 stories, only, did not bring tears to my eyes (they still moved me, just a little less). This Thyroid UK Group definitely falls into an Invisible Thread in action in my life. All the way to Canada. I am fortunate. Also, fortunate to have the author's lovely words at my command in order to be able to gift this book straight from Amazon to handfuls of people that have been those shining people for me throughout life (often, without them even knowing it) (some as long over 30 years ago) as a thank you and a recognition. Threads are growing!

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Hypogirlss4 years ago

This is a quick follow up i didn't want to ruffle that other persons feathers but, please

remember that on any of these sorts of forums you will encounter people of all sorts and at different stages of their own journey. As well various types of people positive/negative and everything in the middle. I'm not saying that you are "cured" but your numbers and stories that we've shared your journey reminds me a lot of my own, both with symptoms and even your treatment and test results. I've come across that member before and they seem to have mostly negative things to say. So please don't take it to heart and your numbers are indeed promising. how do you feel? that's the most important question of all. I spoke to my sister who is in fact a Dr herself with hypo and she agrees that your numbers are in fact quite promising!! So please don't let certain comments get to you, trust me i had to learn this the hard way. I am a fairly sensitive person and let negative comments get to me in the beginning. Please if you are able to block out comments like that please do. i've had a couple of back n forths with that member and talking to them does no good. so just consider the source and keep doing what you are doing because it certainly seems to be paying off.

Mitzvah_heroes in reply to Hypogirlss4 years ago

Hello Hypogirlss! I am finally picking up energy as my terrible cold/flu of three weeks now is beginning to resolve. I wanted to point out my appreciation for all your caring words! To think you actually took the time to bring my numbers to your sister's attention to obtain a "professional" opinion! You're the best :)!!

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blab_catcher24 years ago

Hello angels on earth,

I would just like to take this moment to thank everyone who has set up this forum it seems to be a very powerful tool not only for knowledge sharing but the sharing of incredible peoples stories and hope!

Which leads me to my second thank you and that is to the amazing people that have shared information and possibly even more importantly their stories and given hope to I'm sure many people but in particular my beautiful wife (mitzvah_heroes) who has endured so much. She is without doubt the kindest and strongest person that I've ever met. I am a lucky guy, I am 1 in 10, she is 1 of a kind. You all have been a bright light in what is another step of her recovery from this dreadfully under diagnosed and life limiting disease. When I say life limiting it certainly appears as though it doesn't have to be life limiting, but sure feels like it during the diagnosis and dosing steps to recovery.

You all have given hope that only people that have been there can truly give. You've also done it in such a way that only truly kind people can. So from the depth of my heart I thank each and every one of you. You have given hope to her at a time when hope is a very hard thing to come by.

I hope that all of you also have a speedy recovery to health and happiness that eludes most. But for those that give so freely of themselves I hope for it to be returned 10 fold. You have truly made a difference.

Thank you! 😊